More than 700 participants walked as far as 10 kilometers along the shores of Leadbetter Beach on Saturday morning for the 2012 Walk MS: Santa Barbara to raise funds for researching a cure for multiple sclerosis.

“We think that the medical research is very close to advancing the science and so it inspires all of us to want to do more because there’s an immediacy,” said Larry McEwen, a member of the board of trustees of the Southern California and Nevada chapter of the National MS Society, which organized Saturday’s walk.

Mr. McEwen told the News-Press that he lost his wife to multiple sclerosis and that, although new drugs have come out in the last decade to alleviate symptoms, there is no cure or even a known cause for the disease.

That is disappointing news for more than 500 people and their families in the city of Santa Barbara who have been diagnosed with multiple sclerosis, said Jeanette Chian, director of the Channel Islands Region of the MS Society.

“With MS your immune system is overactive and it attacks the protection of your spinal cord and then, depending on where the damage has been done, that determines your symptoms,” said Ms. Chian.

Because the disease manifests in various ways, it can be hard for others to understand what an MS sufferer is going through.

“It’s a disease that fluctuates over the course of it for people, and they can go in and out of having either fatigue and different symptoms of it, but they look like they’re doing OK,” said Susan Bradley, interim chapter president of the Southern California and Nevada chapter of the National MS Society.

For Kim Phillips, it all started 25 years ago after she had graduated college. She noticed blurred vision — a common introductory onset symptom — and thought she just needed glasses.

Instead, she was diagnosed with multiple sclerosis and told there was nothing she could do about it.

“It was pretty scary,” Ms. Phillips said. Now approaching 50, she is a National MS Society board member and hopes that one day no one will have to go through the same pain she has. Ms. Phillips now uses a scooter and said it helps her openly discuss her condition, while others with multiple sclerosis hide their pain. “It is invisible for the most part. Even if somebody looks healthy and seems healthy, you don’t walk in their shoes,” she said.

Dan Behne of the Guthy Jackson Charitable Foundation said doctors are still working to understand the disease.

Mr. Behne, along with a team of about 50 others, attended the walk to raise awareness about neuromyelitis optica, or NMO, a rare disease of the central nervous system that was thought to be a type of multiple sclerosis until recently. He said it was important to be a part of the MS Walk because 90 percent of the 800 patients he has come in contact with were first diagnosed with multiple sclerosis before finding out they actually had NMO. “A lot of these patients were once part of an MS Society because they were diagnosed that way and then when they were diagnosed with NMO, they felt like they shouldn’t join these walks,” Mr. Behne told the News-Press. He said it is important that people diagnosed with MS rule out NMO, through a simple blood test, because treatments for MS may be ineffective for NMO or make the symptoms and disease worse. “We want people diagnosed correctly the first time,” he said, adding that doctors should not be blamed because the disease is so rare that many are not aware of it.

Mr. Behne said the NMO group members raised more than $5,000 for the National MS Society because they believe MS research will complement NMO research.

Ms. Chian said the NMO group was one of the most generous participating teams, but that she was thrilled with the gifts of other attendees. The fundraising goal for the local walk was $75,000, and Ms. Chian said more than $65,000 had been raised by the start of Saturday’s walk. The MS Society is still accepting late donations. More information can be found at walkcal.nationalmssociety.org.

Since I started at the Genesee Sun, I’ve encouraged readers to suggest ideas, issues and topics you would like to see me cover. Recently, a daughter and her mother, Ashley and Lynn Copeland did just that. They told me of a rare disease that and often goes misdiagnosed as muscular sclerosis (MS). This disease is Neuromyelitis Optical (NMO), and today I will share what NMO is and how it has affected the Lynn Copeland’s life and her family as well as the lives of many others who have been stricken with this rare disease.

NMO is an inflammatory disease of the central nervous system in which there are episodes of inflammation and damage to the myelin (fatty, protective sheath covering of nerves) that almost exclusively affect the optic (eye) nerves and spinal cord. It usually causes temporary blindness, occasionally permanent, in one or both eyes. It can also lead to varying degrees of weakness or paralysis in the legs or arms, loss of sensation, and bladder and bowel dysfunction from spinal cord damage.

In Lynn’s case, her symptoms started in 1998 when she was stricken by sudden blindness in her left eye. It was at this time that she sought the advice of a neurologist who said it was most likely MS but they would have to wait for another episode to run further testing. With the help of steroids, Lynn regained her vision in her left eye.

Lynn would go without an attack until 2004 when she again lost vision in her left eye but chose not to do steroid treatments because doctors told her vision would eventually come back anyway but it may take longer without the steroids. During this time, Lynn also lost vision in her right eye and started a steroid treatment. After that, she regained vision in her right eye but is now permanently blind in her left eye.

Lynn described her experience in the hospital after losing her vision and her eventual MNO diagnosis.

“In 2004, when I was hospitalized for my vision loss, I was told by a doctor – with no bedside manner and in front of my young daughter – that I should start dealing with the fact that I have MS, for both MS and Devic’s patients develop spinal lesions,” she said. “Fortunately, I had a second opinion and when this neurologist reviewed my MRIs he noticed that the length of my lesions were much longer than that of a typical MS patient. Normally MS patients have smaller spinal lesions and bigger brain lesions. Along with the optic neuritis, my Doctor decided I should have the IGNMO antibody, for which I tested positive. At this time only the Mayo clinic was doing the test so he sent my blood work to their clinic.”

The common problem with NMO, because it is often misdiagnosed as MS, is that patients like Lynn are given the wrong treatment method. MS medications will not work on patience with NMO, and often administering incorrect medications can make patients sicker and even lead to their death.

Lynn’s day-to-day life has forever been changed by her having NMO. She can no longer hold a full-time job due to all the symptoms (she had been a collections manager and loved her job). She can no longer fully enjoy activities such as do-it-yourself projects, going to concerts and festivals or being outside for activities due to lack of energy. If she does attempt or plan to attempt any of these activities, it could take as much as three days for her to fully recover. In spite of this, she does not view herself as disabled because she is not paralyzed or wheelchair-bound.

Her daughter Ashley described how NMO has affected Lynn’s loved ones.

“I was 17 when I found out my mother, my best friend, had a rare disease, and it shook me,” Ashley said. “I was terrified, but in the long run I have come to see just how strong she truly is, and I am inspired by her courage and perseverance and am thankful to have her in my life. When you face something like this, you’re forced to grow up a lot quicker – because you now you know she might not be able to do all she has done for you your whole life. She can’t go everywhere we want her to go and come to every event we have, and if we make plans for something, we have to understand that they might fall through because you are not sure how she will be feeling. It has helped us to gain understanding and patience in that sense.”

Lynn and Ashley said overall this has made them aware how much they cherish their family and the strong bond and love they all have for one another.

Lynn said she would not be where she is now without the love and support of an online community of people with diseases like her and a foundation the group got her involved with.

“Originally I found a Google Devic’s disease group which helped because I met people who knew what I was going through,” she said. “This site led me to the Guthy Jackson Charitable Foundation (GJCF), and I am now an active member of their advocacy group. Out of everything the organization has done – the best part is building relationships with other NMO patients and being able to meet with them face to face and talk about our disease, symptoms, and about our lives. This makes you realize you’re not the only one with this disease. GJCF also has a repository where they take blood samples of you and your family to research the disease. Victoria Jackson and her husband started this organization after her daughter was diagnosed with NMO and have put over $17,000,000 of their own money into this in hopes of finding a cure. They are parents on a mission.”

I would like to thank both Lynn and Ashley for bringing this story to my attention, and on their behalf, I encourage anyone who was diagnosed with MS to seek another opinion just to make sure they don’t have NMO and have been misdiagnosed. There is currently no cure for NMO only medications to help prevent and manage the severity of attacks when they occur, but it is the hope of Lynn and Ashley through research foundations like the GJCF and columns like mine raising awareness, that someday soon a cure will be found. I can tell you after interacting with Lynn and Ashley – feeling and hearing their passion for the cause – I hope and pray this happens.

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My story began in 2007 when i lost the feeling in my left thigh. It was not at all painful so i didnt visit my doctor to check it out and regained feeking a couple of months later.

In Feb 2008 i had a pain in my left eye which i thought was a sinus infection. However a few days later i noticed that my vision wasn’t right. I visited my GP who suspected Optic Neuritis. A week later after going totally blind in my left eye i was admited to hospital where ON was confirmed and treated with intravenous steroids. I recovered fairly quickly and regained my sight. MRI revealed nothing and i was tested for many different things including NMO which came back negative.

Ten months later same story with same eye, however i only regained a tiny amount of vision. Same procedure again with same inconclusive results.

April 2009 turn for the same turn of events only this time in my right eye. Again treatment with steroids followed by complete recovery in right eye again nothing showed on MRI.

Two months later same again in right eye same treatment this time with no success and again nothing showing on MRI. Sorry if this sounds repetitive but i want everyone to Get the whole frustrating picture.

In Jan 2010 my boss who is based in Louisville KY, decided enough was enough and told me to Get my medical notes translated and sent over. He contacted John Hopkins who having reviewed my notes said there was nothing they could do. He then contacted the Mayo Clinic in Rochester who said they would see me.

I visited Dr.Pirko a fantastically sympathetic and obviously talented doctor who sat me down and described his thoughts and suspicions. It turns out that in Norway they had done the same inadequate MRI Scan all four times, which he described as 20 years behind the times.

After a bundle of tests still same negative NMO, clear spinal tap( an NMO characteristic, MS patients fluid notmally contains protein)”. However after an intensive 2 hour MRI it was found that i have 3 small lesions on the brain and 1 on my spinal cord.In 3 days they found out more than they had in 2 and a half years in Norway.

Dr. Pirko said that with all the evidence he couldnt say definately whether i have MS or NMo but he thinks that due to the frequency and severity of the attacks he leans more towards NMO. He recommended that i should have Plasma Exchange and begin imediately on Cellcept.

When i got back to Norway i arranged an appointment and saw my 6th different neurologist who was shocked and embarrassed by my story . It turns out they could have done the decisive MRI there all along and didnt have any excuse why it hadnt been done.

He arranged the Plasma exchange which was ungortunately unsuccessful, and prescribed Cellcept. Today i am left with less than 5 pct vision in both eyes , but have been stable after beginning treatment with Cellcept. Its hard not to think what might have been if they would have picked up on my lesions in the first place and treated me earlier, but dones done and you have to look forward.

I know there are a lot of people who have this disease that are a lot worse off than me. Today i am still working full time and lead an active life.

My message to everyone is stay strong and never give up. With the great work that the GJCF and all the doctors involved with the foundstion aredoing who knows what breakthroughs are around the corner.

Thanks to GJCF for all your great work.

I would be grateful to hear from anyone else who has a similar story to mine. Also if there is anyone who feels that i can help them please do not hesitate to contact me. Sorry again for taking up so much of your time but thankyou for reading this story. Good luck and warm wishes to you all.

Me My name is Annabelle Moult, I was born on the 5th August 1982 (I am 30 this year arrrggghhh!!!!). I live with my lovely Husband in Buckinghamshire UK and work at New Era Cap Company EMEA. 5 years ago this year on the 3rd September 2007 I fell ill, the good thing is though that 1 year to the day of the 5th year Anniversary will be my 1st year Wedding Anniversary to my gorgeous husband Danny, who has made my life a better place by being in it, and without his strength and support through all of this I would be in a much worse place. He helped to save my life!! And now the bad day has been turned into a good day!!

What happened? 5 years ago this year on the 3rd September 2007 I woke up in the morning with a very bad headache and blurred vision (I initially thought I had a very bad vino hangover!!) The day carried on and I started to get really painful pins and needles in my legs, so I kept having scolding hot baths as this seemed to ease the pain. Danny (my Hubby, but Boyfriend at the time) took me to see the Harmony Doctors at the Hospital, I was told I might be anaemic and to go home and rest and go to the Doctors in the morning!! So I went home went to bed as I was told, in the middle of the night I got up to go to the bathroom and collapsed. I realised that my legs were not doing anything, so shouted through to Danny that my legs were not working and we needed to get to the hospital. He carried me to the car and we went to AandE.

Hospital At the Hospital I was made to sit on a hard trolley for nearly 13 hours before someone saw me, by this time I was paralysed from my chest down and my vision was decreasing rapidly. The Doctors could not work out what was wrong with me I had MRI Scans, Lumber Punctures, Plasma Exchange, so much blood taken every day all my veins gave up, I was put on a very high dose of steroids for the first week to help bring down the swelling in my brain, which they had seen on the MRI Scan. 3 days later I was totally blind. I was initially at Stoke Mandeville hospital but it was decided I be moved to The John Radcliffe in Oxford due to the high standard of their Neurological Care. I was in hospital for nearly 6 months, they were unsure of what was wrong with me and due to how quickly my illness came on they were unsure if I would ever get better (which they informed my mum and Danny). The JR were magnificent, I had Doctors around me all day every day trying to work out what had happened and what was wrong with me. Luckily I was allowed to have someone (Danny, my Mum or a family member) with me all day every day, this enabled to keep some normality to my life, even if it was just someone getting me up and helping me to wash and dress. Some days going to get a coffee or lunch in the hospital. It was vital that this was done and it helped to keep my spirits higher than expected. I initially dropped down to 6 stone and was so frail I could not even put my own hair up or brush my teeth. But that was a small mission I was able to complete within a month or so. I was moved back to Stoke Mandeville once I started to get my strength back, my eyesight had come back so I could see shadows and although still paralysed from the chest down I was able to work my wheelchair and manoeuvre around. I spent about 6 weeks in the Spinal Unit where I did physio every day, wheelchair skills and general everyday things to learn how to best work with living in a wheelchair and being blind. I left hospital at the end of Feb 2008 at nearly 17stone (due to the steroids), fully wheelchair bound and blind (although I was making more definition of things and starting to see a little colour). I have always tried to maintain a sense of humour and never ask ‘why me’ in my eyes why should it not be me?

Work As said above I work for New Era Cap Company, who have been great in supporting me throughout my illness. They have made the offices accessible for me to get around and I have a large screen with magnifying software to ensure I can see what I am doing and working on. I left hospital at the end of Feb on a Friday and was back in work by the Monday!! Mad you may think, but it kept me sain. I was back to work 3 days a week for the first 6 months, just to ease me into working life again. I was also very tiered all the time so I had to be careful that being back at work did not take me back to square one again. By the September that year I was back at work full time and have been ever since. Remember just because life has changed does not mean it has to stop, there is Access To Work in the UK which helps to assist Disabled people get back to work and live as much of a normal life as they possibly can, ensure your work are aware of your situation and ensure you keep them updated and in the loop with you and what is going on so they can support you in the best way they can. New Era have supported me through this whole thing and I am very grateful to how they have dealt with it and given me the support I need to maintain a job and normal lifestyle.

Friends and Family It is vital to keep positive people around you and unfortunately when times get hard you will find out who your friends and family really are, I have lost friends through this and also pushed people away, but it will make those that stick around even closer to you. My friends and family have been amazing and I could not have got to where I am now without their help, love and support. Never give up, as said a down day is harder than an up day, keep smiling and laugh it is vital to ensure your wellbeing.

Diagnosis It took 2 years before I was Diagnosed with Devics/NMO, so for that time until my diagnosis I felt like a total alien, I did not know what was wrong with me, I had no idea what to do or what to read to help me understand my illness and I could not find a person in a similar situation to talk to and understand the situation I was in. It was a 2 year battle and sometimes quite a lonely place, but once I was diagnosed it was great to be able to have information to look into and understand what was going on inside of my body. I was able to start helping myself to get better. They say NMO is incurable, but never say never.

Physio and Alternative Therapies It is amazing how in tune I now am with my body, but the way I see it is, if you are tiered sleep, if you are hungry eat, if you are tearful cry, if you are angry shout. Bottling things in can only make it worse and hurt you in the long run. I have done a lot of work to get where I am now, but I will not be defeated. DO NOT GIVE UP. I have Physio once a week.; At first it was twice a week and I was paying far too much money a month (I had not been fully diagnosed so I was a bit of an alien) I did not tick boxes and so felt a little lost with what was wrong and what needed to be done to get better. Once diagnosed with Devics/NMO, due to the fact it is linked with MS I got accepted to The Chilterns MS clinic which allows me to have Physio once a week and for a donation rather than spending as much as I would on another mortgage going for private4 physio!! It has been great to be around some likeminded people and realise that yes bladder infection are a regular occurrence, and Yes they will make you go a little bit wobbly physically and mentally for a few days (I tend to get a completely new language and turn my words inside out, upside down), but at least I know that is part and parcel and things are not getting worse. I have found out that the way I keep going is just by keeping going. I may be registered blind and wheelchair bound but, I work full time; I have a leg bike and standing frame at home which I try to use at least 5 times a week if not more. I have found the art of meditation and reiki Finding alternative therapies has really helped me and helped me keep a PMA. I am in pain most of the time, this can vary from day to day pain relief some days does not even touch the sides and the pain can really ware you out, so this is also why I have looked at alternative therapies, I think it is vital if you want to get better to discover all routes (as long as they are not going to harm you).

My list of therapies so far have been: Physio (a weekly thing and vital to keep things moving around) Psycho therapy (good to get things off the chest) Homeopathy (looking into the body and alternative medicines and foods) Breath work (a way of breathing to get the energy around the body to revitalise the body and get out any energies that are negative) Shamanic Healing (a bit out there but something I found that really worked for me) Reiki (gives you a moment to think about the inside of the body and what is going on) Reflexology and massage (to help the circulation and take down any water retention) Yoga (to keep the body connected and keep me flexible) Food/Diet (a very important part of healing to eat the right foods and ensure you are getting the right nutrients) Super foods (such as wheat grass and bee pollen to help the immune system and energise the body)

I have trained to Reiki Level 2 and find that the energy I receive from doing this on a regular basis can ease the pain that I am in and help with a healthy state of mind. I try to meditate and do Yoga a few times a week. The meditation ensures a healthy state of mind and support from another aspect to ensure my wellbeing. Doing Yoga helps my body connect with itself and keeps me in line. Building my strength and focus on getting better. I believe in Shamanic healing and have done a number of soul retrievals and shamanic eye healings which build my awareness and my body and mind. Each time I have done one of these therapies something heals and amazingly supports in my wellbeing and improves me to my goal of walking and seeing fully again. Without having found these alternative therapies my and body would not be as well as they are now and the continual improvement is a blessing. Without these I would not be where I am now and I would not be as mentally healthy without them.

Life Goes On The list goes on and I am still trying things out. I can say after 4 years I am still improving and moving forward. I have nearly lost all of the steroid weight an am a stone off my fighting weight 10.5stone. I am registered blind but can now see colour and things in more definition, I have taken the magnifying software off my computer (but still have it set on the highest disability setting) and I am now paralysed from the Hips down rather than the chest (I am approx. an L1 rather than a T4).

Life sucks I know that but it will get easier just be positive. I still have up and down days I just know how to deal with them.

Remember Life is for Living, Loving Smiling and Laughing xx

If you would like to contact me to ask any questions or just to chat then I would be more than happy to do so. You can either contact me at bellaroo2003@hotmail.com

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I managed to make my way through therapy and was back on the walker again. This attack made me much weaker and knew I had a long way to go to get back to even the place I was. I was willing to accept this after awhile because I really had no choice. I remembered my vow that I would not let this disease beat me, I don’t like to lose. The part that I could not accept was that I was 1 in a million to get TM twice! I packed my bags and with my sister Kristi in tow (God bless her) went to John’s Hopkins to figure this out. I live in South Florida, so it was not and easy trip. Insurance would not cover this visit so we did our best to get there and get a second opinion. After going through all of my records, Dr Pardo thought it might be something vascular, so he recommended that I get a spinal angiogram. I went to University of Miami to get the angiogram and it was negative. I was disappointed because I felt if they found something in my spine, they could fix it…. no such luck! I was then referred to a neurologist at the University of Miami. After ordering the NMO-Igg antibody test, I was diagnosed with NMO, it was positive. According to my medical records, I had been tested for this earlier on in the year but it was negative. I was infused with Rituxan ASAP and have had 2 infusions thus far. I am told that I am fortunate to have been diagnosed so early and put on the treatment, this I am extremely thankful for. The total time from the first attack to getting Rituxan was 10 months and 2 attacks. I am progressing well, walking with a cane, driving, doing spin classes, pilates and anything else I can do to get stronger. I have a lot of good days and some not so good, but I know I will get better in my heart because I am so determined not to let it beat me…. My family and friends have been extremely supportive which has guided me through this illness. My husband , I can’t explain how wonderful he is, my rock and my number one fan… these are the things I am most thankful for!

My first episode attacked my conus and the second to my spinal roots , which I have read is rare in this disease (go figure). Ultimately my hips down were affected , and so far no real optic neuritis issues (although I have had a couple of scares). I am remaining positive that the infusions will work and I will have no more occurrences. I have quite a bit of weakness and numbness in my legs along with a drop foot in my left foot. I also have bladder and bowel issues but have learned to live with them.

I am so glad I finally had the courage to write my story on this website. It took a long time to get my confidence up and to be willing to open up about my journey to others as well as relive it myself. I hope it gives someone comfort and reassurance to know that someone else has been there too and is moving forward.

Sincerely,

Jo-Anna Steele, Weston Fl

Despite the small number of people affected by any one rare disease, together they add up to about 30 million people in the U.S. who contend with diseases that are poorly understood, poorly funded and in many cases lack national support groups. 

The Rare Disease Day website lists activities throughout the world where people can learn more about rare diseases and the path to new therapies. It also includes a page describing how people can take action to get more support and awareness for rare diseases.

CIRM has several research programs focusing on rare diseases, including an $11 million award to Stanford researchers who are working toward a therapy for the lethal childhood skin condition epidermolysis bullosa. They are hoping to file with the food and drug administration to begin clinical trials in the next few years. You can watch videos of these researchers talking about the disease and their therapy approach here. 

Other rare disease research projects that are within a few years of clinical trials include a $9 million award for a sickle cell disease therapy, two projects worth $34 million for HIV/AIDS (video about that project here), a $10 million award for ALS (Lou Gehrig’s disease) (video about that project here), and a $15 million award for macular degeneration (video about that project here). In addition, several of our cancer projects could benefit the many rare forms of cancer that affect only a small number of people.

CIRM also funds research at various stages of progress toward developing therapies for spinal muscular atrophy, multiple sclerosis,muscular dystrophy, Parkinson’s disease, Huntington’s disease,Alzheimer’s disease, Autism, retinitis pigmentosa and Rett Syndrome, all of which are considered rare diseases in the U.S.. 

You can see a complete list of rare disorders on the National Organization for Rare Disorders (NORD) web site. In Europe, Eurordisalso has an excellent web site about rare disorders and YouTube channel featuring patient stories. 

Prior to 1983, rare disorders were at a therapeutic disadvantage in the U.S. because pharmaceutical companies couldn’t make a profit developing drugs to treat diseases with small patient populations. As a result of a national effort on the part of patient advocacy groups, the Orphan Drug Act passed, giving special status to drugs that would treat rare diseases. 

Tim Cote, chief medical officer of NORD, spoke at a rare disease caucus (you can watch his entire talk here). During his talk he said:

“The orphan drug act is, bar none, the single piece of legislation that is the most successful in the history of the United States of America. Orphan drugs have become the biggest growing part of the pharmaceutical sector.”

He went on to say that the Orphan Drug Act wasn’t intended to let bad drugs through the system, but to inspire companies to develop and test transformative new therapies.

“People with rare diseases are entitled to drugs that actually work. The policy of our day is how to stimulate innovation and build upon these successes while retaining efficacy standards that have served us so very well to date and deliver science from the laboratory to the bedside without delay.”

We recently produced a video with Victoria Jackson, whose daughter was diagnosed with the rare disorder neuromyolitis optica. She tells an inspiring story about founding a disease organization and prodding the small research community to start working more effectively—and quickly—toward a therapy for her daughter and other people with the disease.

Jackson’s is a compelling story about the power of patient advocates to make a real difference in accelerating the development of therapies—a story that is not unlike the passage of the Orphan Drug Act and CIRM’s own origins with the passage of proposition 71. 

By May, his entire body was either tingling or numb and his walking became erratic. He began to stumble more. The first thing we thought was that he had a pinched nerve in the neck from the kick. His conditioned worsened until we had to seek neurological intervention. We first went to neurosurgeons that in time ruled out ruptured discs and pinched nerves. All of this was before the MRI, so tests were not quite as accurate and thorough.

Gary’s walking continued to deteoriate until he was placed in the hospital for the second time in August. Within a week, his bowels and kidneys were trying to shut down. Exploratory surgery was scheduled and a biopsy was taken of his spine. After days waiting and the precautionary IV steroids, Gary was diagnosed with nothing but his walking and such was improving. Gary spent 1 month in the hospital for therapy. After a 2 week stay at home, we went ot the doctor for a check up. He stated that Gary had MS with no test results to back it up.

We played “find a new doctor”. We settled with a neurologist that would say it is MS and then the next visit it wasn’t MS. No test would confirm or discount MS, even though by this time the MRI were available. Gary stopped seeing this neurologist and went into a 8 year remission. He was almost normal, except for the 1 blind eye, that he had before I knew him and we thought it to be related to a welding accident. In November 1991, Gary hurt his back and woke up all the neurological problems.

After 1 month of increasing nerve issues, Gary started urinating on himself one morning. I called the old neurologist that had cleaned out his records and would be glad to see him in about a month. I knew we didn’t have a month so I took Gary to the ER in Memphis. I knew that the right doctors would be put in place. Gary’s bladder had quit working, the urine was over spilling his bladder, as it had not place to go but out. Numerous MRIs showed nothing. Finally in the mid chest area, spinal swelling was indicated. IV steroids were given and Gary got better. A large staff of doctors finally diagnosed him with MS. There was nothing else it could be.

In a year’s time, Gary lost vision in his only good eye, which prompted us to go the ER again and meet up with his new neurologist that didn’t believe he had MS. After this episode the neurologist stated that Gary had to have MS. There was nothing else it could be. After 10 years of no specific diagnosis, the doctors determined it had to be MS.

Gary had many attacks within the next 15 years. He took Betaseron for his MS and then changed to Copaxon. His neurologist had gone into research, so we had yet another new neurologist. The files were just handed to her and because of finances, Gary and I declined yearly MRIs.

When Tysabri made its debut in the MS world, Gary opted to try it. By now, he was permanently on a cane and had to have aditional assistance to walk. He could see but was considered legally blind from a few optic neuritis attacks of his good eye. The bad eye was still blind, completely. The baseline MRI required with Tysabri users showed no lesions on Gary’s brain.

The neurologist stated that she didn’t think he had MS, she thought he had neuromyelitis optica and there was a blood test for it. We said ‘oh no, here we go again’ and nothing was going to stop him from getting his Tysabri.

I came home from the doctor and researched NMO. What I found was almost exactly what Gary had been experiencing for all these years. We opted for the blood test and waited for 2 weeks. And I do mean we anxiously waited, but in our hearts we knew that he had NMO.

In 2 weeks the tests confirmed our suspisions. After 25 years, Gary was finally and correctly diagnosed. This is a VERY condensed version of Gary’s story, but you can get the idea that it has been some kind of journey for both me, his wife and him. Gary is now confined to a wheelchair. He can walk a little, but not very far. Within this past year, NMO took his remaining vision. But Gary still fights to do. He does whatever he can and I try to find any way possible for him to adapt.

We explored our options, and decided that it would be a great Idea if we got married and moved to the US to pursue better careers with our degrees. So we put our plan into action and started looking for options into which state to choose. We researched the many job opportunities looking for bilingual candidates and decided that Texas was a great choice. She had her aunt in Texas and we asked her if she could lend us a hand and receive us in her home, for a while, until we found jobs and could find our own place. She accepted and we started moving forward on our plans. We sold or gave away, every possession we had. My friends and family were really supporting in our decision and helped me in every step. I finished my MBA in November, and that same month we had our wedding planned. IT was one of the happiest days of my life. We left for a short honeymoon, and returned to Puerto Rico to start packing for our trip to our new home, Texas.

As soon as we arrived we started applying for jobs. I applied to thousands of jobs, got many Job Interviews, but none of them really made me feel excited. I was feeling the pressure of accepting the first offer that came. We had our savings, but I knew that they were not going to last long. I sat down with my family and we talked about our situation. They supported me in looking for a job that I was going to feel comfortable with. So I stopped applying for everything and started pushing towards my career choice. I wanted to be a professor again; I knew that was my calling in life. After a few days of sending resumes, I got my first interview in something I liked. I remember it well because I was so nervous that my accent was really bad, and I knew I sounded like Ricky Ricardo from the show “I Love Lucy”. Then my second interview came, and it was the one I was really hoping for. It was as a Technical Professor of Computers, teaching classes in all the subjects about Information Technology I loved. It was the Job I had always dreamed and hoped for.

The day for the Interview came, and I had practiced every day of that week with my family. Finally I got to the Interview and when I stepped in front of that classroom, I felt right at home. After my presentation, they took me to a room and right there gave me the books for the classes I was going to teach. It happened so fast that I didn’t even have the time to savor exactly what was going on. As I walked outside the school carrying 5 or so books and many other hardware related objects that weighed almost 50 pounds, it dawned on me. I GOT THE JOB!!!!

I was so excited. I spent three months as a part time instructor and loved every minute of it. I didn’t care that I had to drive and hour and a half every day to get to my job. I was doing what I loved and I was getting paid for it. After those three months they gave me the Full Time Instructor position. Now, instead of 4 classes, I was going to teach 6. I became a workaholic. I was at work almost all day, because I also go involved in tutoring students in other subjects. Co-workers and students always told me all the time that I was always smiling. When I got home at night, I was so happy. I was living my dream. I was so fortunate about everything, but above all I was lucky to have such a wonderful wife that understood all that time I was neglecting from her. I feel so blessed for having her by my side. Honestly, I felt invincible; I felt the cliché of being on top of the world!

One day, after finishing the theory in a class. I felt pain when I moved my left eye. I had not noticed, but focusing was a problem with that eye. I blamed this blurry vision on the light from the projector when showing PowerPoint slides, usually you step in front of the light, now and then, and it blurs your vision a bit. I also had a bad headache, but I blamed it on not having breakfast, nor lunch, that day, because it was one of the hectic days. I packed my tools and books, and left for home. The headache wouldn’t let me sleep, but I didn’t care. The next day was my day off, and I could get some sleep during the day. After many doses of Ibuprofen, the headache was dimmed enough that I could fall asleep. The day after that was horrible. The headache was so bad that even opening my eyes made it worst. I started thinking that maybe I was having migraines, but I had never had them before. I didn’t know what was going on, and I started getting really scared because my vision in the left eye was really impaired. It was like if I had just splashed out from the deep end in a pool and my eye was looking through water. I explained the symptoms to my uncle and wife and did a bit of research in the Internet. We decided that it was best if I went to a Hospital. There was one problem, I had no insurance at the moment because my insurance was supposed to start the first of the next month and it was still the 16th. I never had something like that happen before, so we decided to go to the nearest Hospital ER.

Let me explain a little bit of what was going through my mind at that moment. I have always been a big guy. I am 6’2, about 320, but never had any serious health problems. I had suffered from depression but no problems with anything else. In fact, I was always a really active guy for my size. I love sports, and like I said before, bowling 3 times a week and playing basketball were part of my weekly hobbies. Now, all of a sudden, I have this splitting headache that is making my eye blurry. I was basically panicking, and so was my family. I spent 1 hour in the emergency room. They did a CAT scan, a couple of labs, but they didn’t find anything. They told me that I had to see an Ophthalmologist because the pain may come from bad eyesight, and maybe I needed glasses. We left and I went straight home, took some sleeping pills, and tried to rest. The next morning, I went to work, with that horrible headache still there and my eyesight in the left eye still blurry. I kept working like that for about a month, until my insurance started and I could go to an ophthalmologist like they suggested in the emergency room.

At my appointment with the ophthalmologist he did every test available in his office. They dilated my eyes, vision tests, color tests… you name it, it was done. He kept looking at my eye with that eye microscope, and his demeanor started to change. He was acting as if he had found something he didn’t like. I started getting anxious and he noticed. He asked me if I have ever been to a Neurologist. I answered no, and he said that I needed to make an appointment with one ASAP. I asked what was it that he saw, and he told me that there was something that wasn’t right and asked me if I had anybody in my family that had MS. I knew about my mom’s cousin that had MS, but nobody else I knew of. He finally said that I needed to see a Neurologist, because there was really bad inflammation all around the optic nerve.

I was really devastated with that news. I knew about my mom’s cousin and I had vivid memories of how we went to see him at his home after he had both of his legs amputated from gangrene after having an accident. I never knew anything else about what had happened to him, at the moment. I didn’t know anything else about MS, so my lack of knowledge about it, made me start thinking that maybe I was going to end up like that. I didn’t know at the moment that his MS was controlled. He died because of a bad infection which was caused by an accident he had with a rusty hospital bed and complications with Diabetes. The only thing that kept going through my head during that month was that it was all going to happen to me. To make matters worse, the bill from the Emergency Room visit arrived. For one hour of examinations and labs, they gave me a $3,000 bill. Now, not only was I scared out of my mind with the question of an incurable disease, but I was scared even more of the possibility of getting ill and have to visit a hospital again.

We searched for a good Neurologist. I started asking people around work, to see if they knew a Good one in the area. We heard of a good Doctor that had treated one of my co-worker’s family member. That family member had MS, and they recommended him. So we went ahead and scheduled a visit. In the meantime, I fell more and more in depth with my job. If I loved it before, now it was my escape from thinking about my health, the unknowns, or what ifs.

After two months, I went to the Neurologist appointment. We talked about what had happened with my eye. We talked about what I was feeling, symptoms, and all the things that were going through my mind. He told me that he had to do some MRI’s and a Spinal tap to see if it was what he suspected, MS. I understood and his office started scheduling all the examinations. I went to work that day, mostly depressed, but not because of the possibility of having MS, but on the knowledge of how much those Doctor visits cost. and not knowing how was I going to be able to pay for all the other things that I needed to take care of. I really knew I had a problem. I had to pay the $3,000 bill first, before I could get all the other examinations done. Unfortunately, my wife was trying still to find a job. But she wasn’t as fortunate as I was.

I kept working and working and moved closer to my job. We kept paying our debt bit by bit. After three months of this, finally we paid it completely and could afford to do the exams needed to find out what was going on. So this meant that I had to use my Medical Insurance. My experience with the Insurance at that moment can be summarized in one sentence: It is one of the most frustrating and disrespectful experiences I have ever had. It is a time where, basically, other people put a value on your life, health, and peace of mind. I also had the experience of not having one. So frustrating or not, at least I knew I didn’t have to pay those astronomical bills. This meant that I was going to learn the whole Insurance lingo and comedy routine. First they couldn’t help me with the first examinations because I had not paid my Deductible. Then, after many examinations and medications, they would not pay for the next set of MRIs because I had not fully met my “Out of Pocket” expenses! After I met those expenses, then they started sending me letters that they did not cover Pre-existing conditions. So that means that I have to show that I don’t have a condition that my doctor is trying to diagnose? At the same time you keep getting bills from the hospitals and doctors telling you that the Insurance won’t pay their part because of, this and that. Thankfully my Doctors were so understanding, and their nurses were so well trained that they knew all about how the insurance companies work. So they persisted with my wellbeing in mind. Basically it is the run around they do to everybody, in hopes that you get so frustrated that you pay the amounts they specifically did not pay in the bills and stop trying to fix the services and benefits that you have paid for. It is all about the money they don’t have to pay, and not the life affected by that money. But of course, they will never say this, and at the end, it is all a communication problem. But as soon as I understood the rules, I knew how to play the game, and they were not going to catch me off guard again. Knowledge is one of your best allies, always. By that time I knew more about their insurance, than many of the customer service representatives. Thankfully one of my co-workers was also a lawyer, and gave me a lot of help in the matter. Keeping every bill and track of every examination cost, is the only defense against these problems. Every time we called, they gave us different explanations on whatever they thought was the situation.

On October of that same year, I was diagnosed with MS. By this time, I had learned so much about MS that I saw this, not as bad news, but as the great news of knowing what was going on, and the key to treating all the problems I was having. I was getting my medications and getting infusion to see if they helped me with the vision problems. I was decided to fight no matter what. I had some health problems, but nothing I could not deal with. Everything was starting to settle down and I was about to receive great news. I received a promotion at my job at the end of that year and was now the head of the Department of the school of Information Technology.

Three months went by and the medications made me feel horrible. I knew that this was the prize I had to pay for mitigating the possibility of new attacks. Nothing was going to stop me from doing what I loved. No fever, no pain, no blind eye, was going to be enough to keep me off my duties and responsibilities with my students. But one thing always bothered me. No matter how many infusions I got, and how many times I had heard from other patients and doctors that the vision was going to get better in my left eye, it was actually getting worse. By this time I also had a Neuro Ophtalmologist in my team of Doctors.

One day, I got a really bad pain in my legs. The pain was as if somebody was burning them and ripping them apart. It was horrible. After that, they went numb. I did not know what to do and I just told my wife. I couldn’t sleep. The next morning, my left leg was horribly numb and my thigh was even worse. I couldn’t even touch it because the pain was so excruciating. I went to work like that, and my doctors said that he had seen, in my latest MRI, that I had a bit of arthritis in my lower back. This could mean that maybe I had a pinched nerve. So I went to work, made an appointment with a chiropractor and continued adding problems to my, “not solved” list of ailments. To this day, I can’t really fully use that leg, and the pain is really bad.

I had been taking MS medications for about six months. Symptoms continued to surface, but nothing like the one that was going to shake my whole life. Around August, I woke up one day with a headache that was even worse than the ones I had before, when I partially lost the vision in my left eye. I noticed that now it was my right eye where I was having the pain. My vision was now completely blurry in both eyes. I called my wife and basically fell into tears. I was really in shock. I never expected anything like this to happen. Not after I thought the disease was supposed to be medicated. I did not know of many patients of MS that were blind in both eyes. I could not believe it. I went to my doctors and they told me that I had to get more help. They told me that they had already done every treatment they had in their power and they really did not know how it was attacking my right eye now. They sent me to the MS clinic in Dallas and there, the Doctor started all the same procedures I had, once before. I was really hopeful that I was going to get my vision back because we were capable of taking fast actions this time. After two months of trying everything, none of the treatments, Infusions, IVIG, etc. made any difference in my vision. I was so desperate, and thinking about it, still brings tears to my eyes. On top of everything else, my fatigue levels were horrible, even walking for five minutes made every part of my body ache. The biggest question in my head was what was going to happen with my job. I tried everything and even daydreamed in my mind about the impossible. Finally my doctors gave me the bad news that there was nothing more that could be done, except for me to apply for disability for a couple of months to see if my eyes got any better. At least with short-term disability my job was protected and I could have 5 more months of treatments in hopes of returning to work. One day as I sat with one of my doctors, I started asking questions that surely sounded desperate. My doctors sat down with me and basically told me exactly what the reality of the situation was. That there was nothing that could bring my vision back at the moment, and that in fact, it was going to get worse and worse. I hated him at that moment. I was so angry. But then he grabbed my hand and told me he was sorry. I understood. He didn’t want to let me fly off in depressive hopelessness. He wanted to let me know, that unfortunately in the present day and age, there is really nothing that can be done for the situation. I had to accept it and try to prepare myself for the changes. I still have hope, but I don’t let it play with my sanity. The best way to explain it is with a phrase I saw my best friend use one day. I have never been a Religious person, but this phrase made me find peace in many steps of my journey. It said: “God, give me strength to fix the problems that have a solution. Give me serenity to accept the things I can’t change. But most of all, give me the wisdom to know the difference”. Devastated, I had to notify my work about the situation. Being there that last day, and walking out of that building, will be something I will truly never forget.

Unfortunately, my vision kept getting worse and worse. Finally my doctor changed my medication and gave me Celcept on top of my MS medication because they suspected it could be NMO. About a year ago they told me that they were going to stop the Rebif, because of the many adverse reactions I was having to it, and they were going to continue with the Celcept. Six months ago they changed my Doctor in the MS clinic, to the NMO specialist. He said that we are going to continue with the treatment and thankfully I have not felt anything get worse. For the moment I am stable. Now I spend my days finding solutions for the many things that were taken away. Technology, being one of my passions, is playing a big role in those solutions. Now I use a projector as my computer screen and, even though I am not able to see everything on an 80” by 60” wall, I am able, to at least, play around with something, keep my mind occupied, and research. Hope is a big part of my life, but it is not my only focus. I ask myself everyday what I can do to make it better. I value independence, and most of all, I value knowledge. I think of myself as forever the student. I am so thankful that destiny brought me to a place where I can get the best treatment possible. And that was all just by luck. I decided to stop focusing on the bad things that have happened and find the good things that were hidden from perception. Ironically, being legally blind, took me to see things in a different way. Now my life has taken a different route. I am fortunate because I am still here. Maybe I am not capable of doing all the things I love, but I love trying new ways of being more capable. Thank you for the chance of releasing stress through words. I hope I can help somebody with my story.

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January 1, 2005- After 4 days of continuously vomiting and never ending vertigo, I collapsed to the floor. I couldn’t stand or walk and the room did not stop spinning counter clockwise. I was rushed to the ER and told that it was dehydration, I was quickly released and headed back home. The next day the symptoms continued, and the third and forth day where not any different. I went back to the ER where the doctors and nurses insisted that I go home and rest because it was nothing serious. When I explained my symptoms the first thing they asked was “are you sure you are not pregnant?” and of course my mother’s face turns pale white. I insist “no, im not pregnant, this is not normal, and something is seriously wrong’. I was so weak but I had no choice but to go home and for the forth time I was discharged.

January 5, 2005- I faint again, and my parents rush me to the hospital, I am placed under observation. Doctors are running test to figure out what could possibly be wrong but within hours my lungs collapse and within seconds I have a tube down my throat and I’m placed on a ventilator. I was very fortunate that I was already in the hospital when my lungs collapsed. Had I been at home, I probably wouldn’t have made it.

June 2005- I have now spent 6 months of my life in the ICU fighting to stay alive. After suffering from multiple organ failure, paralysis, and numerous complications doctors still can’t determine what is wrong with me. I had a strange pattern of paralysis, first my legs, next my arms even my face and tongue. I had to accept that from that point on I could not walk, I had to learn to adapt to a life in a wheelchair and taking a cocktail of medications on a daily basis. I could no longer take care of myself and needed assistance with every simple task in my life. I would cry myself to sleep and throw myself on the floor with a feeling of helplessness, fear, and anger. What had happened to my life— I missed being a college student, living on my own, without any reason my life was flipped upside down and I was paralyzes and living back at home being take care off by my parents as if I were an infant. I had an endless array of MRI, spinal taps, and every other thing under the sun. They suspected Gullian- Barre, transverse myelitis, lupus, MS, etc. No clear definitive diagnosis was ever given. I had to re-learn how to eat, bathe, and get around in a wheelchair.

August 2005- I transfer to a local university and return to college to finish my bachelor’s degree; going to school in a wheelchair was a challenge. Everyone looked at me strange but at least I encountered kind classmates that would hold the door and wheel me to the car. I was fitted for braces in my feet and I started to take baby steps with the use of a walker and eventually two canes. I had intense physical therapy and acupuncture. I attribute these two things to my rapid recovery.

June 2006- I finished my BA degree and I was walking with only one cane. On graduation day I told myself that I would let go of the canes and I managed to start walking by myself. I looked silly, like a mummy but that didn’t bother me. I taught myself to drive even against my parent’s wishes and regained some independence. I fell so much that hitting the floor became my norm, not a day would pass without me falling, I had very little balance and at that point I still had no sensation in my feet.

July 2006- I wake up one morning and suddenly I can’t see from my left eye. I wear contact lenses so I thought that perhaps I had injured my eyes or rubbed my eyes to much. I wait a few hours before saying anything to my mom who panics over every little thing. The next day I visit my optometrist who informs me that she can’t see anything wrong with my eyes but refers me to an ophthalmologist to better determine what might be wrong. I call for an appointment and because of my medical history they suggest I see a neuro-ophthalmologist. He reviews my case, checks my eyes and informs me that he might have a suspicion of what could possibly be wrong with me. He requests I have a blood serum exam for NMO IgG. Later that month I receive his call. I remember the conversation vividly. “I have some good news and bad news Maria”, good news is the results are back from the blood serum exam, the bad news are that as I predicted you tested positive for NMO.

August 2006- I decided I wouldn’t let NMO determine the rest of my life. I met the most incredible neurologist and he made sure to take very good care of me. He quickly explained what NMO was and what I had to do next to get better. I was immediately placed on Rituxin two rounds every six months. I asked “when does it stop”? He answered, “indefinitely”. I was given steroid and my vision returned 100 percent. I also took Lyrica to help with the pain in my legs. I enrolled in graduate school to pursue a degree in epidemiology. NMO cant stop me! I lost all of my hair and decided to get a wig.

2007- Balancing life with NMO and graduate school was no walk in the park. Living in Miami which has 80+ degree weather year round didn’t help either. I was constantly tired, hot and irritable. Those steroids really took a toll on me. I was tapered off corticoid steroids and I slowly stared to feel like myself again. My hair was growing back and I felt better.

2008-I felt like myself again, life had normalcy, I knew when not to push myself too hard and I learned to put close attention to my body. I maintained a healthy lifestyle continued to live life in a positive and happy mindset. As a researcher I couldn’t stop myself from reading all the latest NMO literature, every time I saw my neurologist I would bombard him with hundreds of questions. He advised me to not let NMO take over my life and he strictly enforced that I read no more than two NMO related articles a month.I received a Masters Degree in Epidemiology which only makes it worst because I have complete understanding of NMO data and become overly involved in NMO research.

2009- I move to Texas to pursue a PhD meanwhile flying back to Miami every six months to get Rituxin. Rituxin was not my friend, I had very bad reactions to it. Each infusion would last 48 hours because it was at the lowest possible rate. I would be cold, hot, itchy, uncomfortable, tired, sleepy— you name it, I experienced it!

2010- On January 2010 I decided I was ready to stop taking Rituxin. It was a personal choice that I made against my doctor’s wishes. He asked me if I had a death wish, I said, no. I want a long life and a chance to live a healthy life. I decided to get off all medication because I felt it was the right thing for me. I had not experience any flare ups and everything seemed right. I honestly wanted a break from the endless array of doctors, nurses, and hospitals. I’m a very stubborn woman, for better or for worst I wasn’t on any medications anymore. For over 3 ½ years I had been on Rituxin and I am grateful to it because it gave me my life back. On April 2010, I married my lovely husband.

2011- I am pleased to report I had no flare ups, my health was better than ever. Staying busy always helps, I continued to work on my PhD. I check in with my primary physician every once in a while just to make sure everything is okay.

January 2012-My scars are a constant reminder that my struggles were real, that I live with a disease that has the potential to suddenly take my life. I am grateful for the diagnosis because at least now I know what I have and I can better prepare for the future Sometimes I think its just a matter of time before the next attack and I feel as if it is a ticking time bomb. But I don’t let it get me down. I have moved forward with my life, I’ve been in remission for nearly 5 years. If you saw me walking down the street, you would never thing I have NMO. Once in a while someone will ask me about the tracheotomy scar and I smile. I have not suffered any relapses but I still can’t feel my toes. The downside to not feeling my toes is not being able to slip back into my pretty shoes. I’ve had to forgo high-heels but that’s ok because I have two amazing sisters who wear the most fabulous, stylish, sexy stilettos and I live vicariously my shoe addiction through them.

Future plans- As of today I am 29 years old, living life the way I always dreamed of, happily married and working towards completing my dissertation for a PhD in Public Health Science. I live in Chicago with my husband and our three dogs. Our next goal is to start a family in 2013 god-willing. I talked to numerous doctors about the possibility of conceiving and every single one of them has recommended against it. I respect their opinions but I learned a very long time ago only God knows what he plans for us. I have been off all medication/treatment since January 2010. In a way, NMO has shaped who I’ve become. I am kinder, more tolerant and more grateful for the simple things in life. I thank god for keeping me alive, for giving me back my sight and the ability to walk again. I am grateful for my family and friends. Now I eat healthy, rarely any meat, and work out regularly. Stretching is a must, if I don’t do it daily the pain in my legs would be unbearable. I live a fairly healthy life; I do it for me in order to be healthy and to live life with NMO without it dictating my every move. I hope to done with my PhD December 2012 and look forward starting the next chapter in my life. One last thing—the heat flashes have never gone away!I hope my story gives you encouragement to continue living your life.

Fourteen months later, I finished 20 minutes on the treadmill at 2 miles an hour for the first time since the falling down, numbness, and twitching started. And again, I scared my husband by bursting into tears. I was just so overwhelmed at what I’d been able to do.

In January the numbness started, by March I was falling down and my gait had reached a continuous state of awkwardness. It would be another 9 months of tests and appointments before I would have my NMO diagnosis. Nine months of the unknown and feeling my body get weaker and weaker every day.

That 20 minutes on the treadmill (every day now) is sometimes the hardest thing I have ever done, but I am so grateful that I can still do it. I am grateful for my diagnosis and doctors that have a plan in mind for me to manage my symptoms and my life, and for all of you here who know so much more than I do, and are so generous with your knowledge.

Next week we move up to 25 minutes!

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They had told me my nerves in my left eye was so inflammed, they admited me in the hospital for several days with the doses of 1000mg of steroids then i was told i had ON, but that wasn’t it. A month and a half later it happened again, so a doctor there asked if I ever heard or NMO, I told him no so he ask can he test me for i told him yes because i needed to know what was going on with me, I never was a sick person i was always health, they kept asking me did anyone in my family have MS or Lupus, i told them no, no one. so then 2months after that i woked up with pain in that eye again also blind and lost feelings from my waist down to my knees OMG i was going crazy i was like this cannot be happening to me i am still young with 2 awesome sons going to college and the other going to high school. so that Sept. my results came back , the doctors was like you have a rare disease call NMO(neuromyelitis optica) also known as Devic’s I was like what!! what is that, i started getting on the web/internet thats when a story came on discovery health channel and i saw the story of the Ms. Grace Mitchell we all came to love, from there I learned a lot by meeting Ms. Grace on PLM then she told me about Guthy Jackson Foundation..I have been on facebook where I have met others with the disease and learned more about this illness.

Today 2012 I have been relapse free for 2 going on 3 yrs, been taking AZA and steroids, it has work wonders for me so good so bless!!

I was originally diagnosed with Multiple Sclerosis (MS) on October 29, 2009. I started Copaxone on November 7, 2009 to help slow the progression of MS.

I’ve been having vision issues for about two years now and it’s progressively getting worse. I have blurry vision in both eyes that is off and on all day, I also have occasional double vision and I have lost my peripheral in both eyes on two seperate occasions. I voiced these concerns at a routine appointment in my neuro’s office where a second Brain MRI was suggested.

For two weeks I waited for her (a NP in my neuros office) to put in my referral for an MRI. My patients ran dry and I ended up going to the hospital ER and getting the MRI done myself. Two doctor’s from the neurology team at the hospital asked me why I thought I had MS? I told them, “because an MS Specialist diagnosed me and I’ve been on Copaxone since November. Why wouldn’t I think I have MS?” This, understandably, put a lot of questions in my head.

A week later I saw the NP in my neuro’s office to go over the results. I mentioned that I am now questioning my diagnosis and I would like an appointment with me neuro ASAP! I got an appointment less than a week later. (Let me just say, my current neuro is THE BEST (in my area at least), but he’s not the neuro who diagnosed me. I was seeing another MS Specialist within the practice but he left shortly after my diagnosis to volunteer overseas.) Once I got in the room with my neuro, he immediately pulled up my spinal MRI from October 16, 2009. My previous neuro had said that the lesion on my spine was a typical MS lesion. But as it turns out, that’s not right at all.

The lesion on my spine is in my spinal cord, it is also “long and stringy” according to my neuro and spans the length of 6-7 vetebrae. How the heck my diagnosing neuro could think that was a typical MS lesion is beyond me. Even I know it’s not typical for MS. He then told me that the lesions in my brain, I have 2-3, are not typical of MS either.

Back in November 2009 I had the blood test for the NMO IgG antibody which came back negative. My neuro said that I am extra, extra special in the sense that A. I have NMO. B. I tested negative for the antibody and C. I show little debilitation (if any) caused by the lesion in my spine. My eyes are in tip-top shape too according to a Neuro Opthamologist.

I have received a referral to the Mayo Clinic in Arizona and I have also had my neurologist write a letter to my insurance company to further push them to approve my visit, 100%, to the Mayo Clinic. My neuro is very supportive with the fact that I want to visit the Mayo Clinic, whom I feel to be the leading force in NMO research, and getting a confirmation that I do indeed have NMO.

And just for fun, below is a list of symptoms I have experienced over the years…

• Numbness in Arm and Hand
• Blurred Vision
• Vertigo
• Heat Sensitivity
• Trouble Sleeping (has improved)
• Hands Shaking
• Migraines
• Frequent Headaches
• Hallucinations
• Pins and Needles feeling on Hands and Feet
• Complete Loss of Peripheral Vision
• Pain in Legs, Back, Neck, Back of Head, Arms, Hands and Fingers
• Constant Ringing/Buzzing sound in Ears (Tinnitus. But I still have Super hearing
• Floaters Dizziness/Lightheaded usually when Standing Tunnel Vision Memory Loss :)
• What was I talking about? =) Just kidding.

“Because I am still in love with you… I want to see you dance again…”

Today I danced with Maria… !

Just the way it is… once you realize your new way of life there is no other choice but to adapt and continue… living day to day, step by step, enjoying every good moment life presents to you… and learning to get over the bad ones…

Dealing with symptoms on a day to day basis is part of our lives since my wife Maria was diagnosed.

From the beginning being informed had been the best way to cope with this new way of life for us…

Once I wrote on my blog that the best advice I got, the first day of Maria’s first symptoms was from her Neurologist in South America, she told me “son, please don’t think that all the bad news that you find and read online are going to happen to Maria “… all patients are different and react differently to treatments … “ be informed and ask questions so you can make the right decisions…

Once I found this group my perspective about NMO changed…

Tim and Gracie, along with all of you with your posts and now with all the support from the Guthy Jackson Foundation had been very important since Maria’s DX… and there are no words to thank you all for that…

Other line of support of course had been our Doctors… we had been very, very blessed to had found the best doctors to treat Maria.

My wife Maria was diagnosed in South America right after her first symptoms, there in our country Venezuela, we found a very kind Dr. that knew about NMO and treated her right away…

Once we got back to the US, we found a Primary Doctor that was willing to listen and learn about NMO ( it is amazing how much he supports Maria and how much he knows now about NMO now… ( he listens to me and researches a lot ).

We also found a Neurologist in our city here in the US that not only is very smart and knows about NMO but is the kindness person. We feel very safe under his care…

We have the doctors personal mobile phone numbers !… we can call at any time, any day and they answer the call…

Something very important that we accomplished is that the three of them communicate with each other about Maria’s care…

I keep Maria’s file up to date on the Patient’s like me site ( I print a report every time we visit a Dr. or have to go to the ER ), now when we visit an ER and a Doctor’s office I bring with me the brochures about NMO created by the GJF, I also registered on the web site of the Lab were Maria gets all her test done so I can print the results in advance and make copies for all the doctors…

I created a chart of all of Maria’s meds, ( assigned a color to each one ) printed little colored circles and glued to each bottle… also printed a time chart for the daily doses… )

Maria programmed her smart phone with all the doses and times and she also programs all her Doctor’s appointments and Physical Therapy times and date on an Ipad application and on the smartphone as well…

NMO may be part of our day to day now… but NMO is NOT our life… !!

I know that many of you had not been as lucky as we had to find Doctors that know a lot about the desease.

So it is very important for you as Patients or caregivers to be informed…

As I said above NMO is part of our lives but we don’t let it rule our lives…

We had also cried ourselves to sleep many times… we’d had many of those days… but there are always better days ahead… I assure you that…

Any new symptom is a new flag and a new question… but being informed helps me to have the patience and the tranquility to overcome the fears and to make the right decisions for Maria at the right time…

I never make a decision or changes on Maria’s treatments without consulting with the doctors… “never”.

Many times I post questions on this site about a symptom or procedure and I thank all of you that give us advice, support and comfort.

I read and gather all of the info, but I always discuss with our Doctors before I take a new approach on Maria’s care…

Trusting your Doctor’s decisions is very important, but you as patient and you as caregiver have to be proactive, open to ask questions, to talk to your Doctors… is the best way to feel that you are making the right decisions as well…

We accept life as it is now, we do not ask why this happened to Maria, we never blame God or anybody for this new way of life…

We were raised as Catholics ( go figure our names are Jesus and Maria… ) but after this change in our lives we are not more religious or less religious. We still give thanks and we pray every day for all, for being alive and being able to help others…

We are sure there is a reason for this to happen and we take it as a way of helping others cope with this new way of life… we support Spanish speaking patients in South America and in the US that get in contact with us…

I do not see my wife Maria as being sick… I love her as much as the first day I saw her… maybe even more now because of her courage…

Maria was quadriplegic after her first attack, she lost almost 90% of her vision on both eyes… now her vision is back to normal… she can walk without assistance… and Today we danced again !!!

Our life changed since her diagnosis… but this is our life now and we accept it, we live it, we take it one day at a time… one step at a time…

We Love You all… you are our friends… you all are part of our family !!

And remember… there are always better days ahead…

Jesus & Maria Loreto.

maria & jesus.jpg (77 KB)

It’s hard to decide what to appreciate most about Martha: her warmth and friendliness, her incredible commitment to the Repository and the people who participate in it, her amazing capacity for handling the hundreds of details required to perform her job..the list goes on!  What does she love best about her job?  ”The opportunity to feel like I make a difference every day.  Not many jobs offer that excellent benefit.”

When Martha is not on the road, she loves to cozy up on her couch to read Vanity Fair.  What would she be sure to take with her to a desert island?  Her sweetheart, Lee, her two kitties, Cleo and Cassie, and her favorite beach read, “Love in the Time of Cholera” by Gabriel Garcia Marquez.

Are you interested in participating in the Repository but you don’t live close to a collection site?  Do you have general questions about participation?  Martha is the one to call.  Contact her at acp.utsw@guthyjacksonfoundation.org or 214-645-0543.

That had been the progression of Devic’s disease or syndrome since Dr. Eugene Devic first described the mysterious symptoms of his patients in 1894. In the years since, patients have often been misdiagnosed with multiple sclerosis (MS) because of the similarities in symptoms. Yet doctors remained puzzled as to why patients with Devic’s disease didn’t respond well to the treatments traditionally given for MS.

Recent research has improved the diagnosis and even enabled early diagnosis before the onset of the severe, debilitating symptoms of blindness and paralysis initially described by Dr. Devic. Since early diagnosis is now possible, the disease is now preferably called neuromyelitis optica, or NMO. The name also accurately describes the two areas of the body most affected by NMO – the optic nerve and the spinal cord.

Researchers discovered the presence of a protein, Aquaporin-4, in the blood of NMO sufferers that is not present in patients with MS. They also have identified early symptoms that doctors can look for in a patient to alert them to test for NMO. Early symptoms include pain in one part of the eye, unexplained nausea and vomiting, numbness, tingling or weakness in the limbs, vision changes, loss of bladder and bowel control, painful spasms, and even persistent hiccups.

Although these symptoms can be indications of other diseases, including MS or stroke, the persistence and worsening of the symptoms indicates to doctors the serious nature of the patient’s condition and the need for testing to determine which disease is the cause. Hopefully, the doctor will order the blood test for NMO as well.

That was the case in 2008, when 14-year-old Ali Guthy suddenly began to lose her eyesight overnight. Her doctor made the unusual, but fortunate, decision to test for NMO to rule it out. Instead, Ali’s test came back positive for the rare disorder. She and her family were told the disease could progress to blindness and paralysis within five years.

Finding doctors who specialize in the treatment of NMO, however, was more difficult. Victoria Jackson, Ali’s mother, searched exhaustively for doctors, researchers and websites that could shed light on the mysterious disease. Finally she located Brian Weinshenker, MD, a specialist in NMO, at the Mayo Clinic in Rochester, Minn,. Jackson soon learned, however, that there was no cure for NMO and very little research being done. So she began to assemble a team of researchers and doctors in major research institutions who could contribute their expertise to her mission. She and her husband, Bill Guthy, founded the Guthy-Jackson Charitable Foundation to fund research into NMO.

“I became a mom on a mission to find a cure for NMO,” explained Jackson. “Today, the Guthy-Jackson Foundation is funding 80 researchers and scientists in 12 countries.”

It remains the only foundation focused solely on solving the mysteries of NMO. A large part of the foundation’s goal is to educate the public about the rare disease so more people can be accurately diagnosed and more research funded.

Currently, it is estimated that approximately 4,000 people in the U.S. suffer from NMO. Exact numbers are difficult to pinpoint because sufferers are still often misdiagnosed with MS. Many more women than men appear to be struck with NMO, at the rate of 4:1. Although more women than men suffer from autoimmune diseases in general — where the body inexplicably turns on itself and develops antibodies that affect various parts of the body — NMO has an even higher number of female sufferers than most autoimmune diseases. Triggers appear to be genetic or environmental and have not been definitively determined.

NMO is typically treated aggressively with steroids to “calm down” the immune system so it stops making the antibodies. Steroids also reduce the swelling and inflammation that can cause pain and other symptoms. Then doctors determine whether longer term treatment with steroids is necessary. There is still no cure for NMO. Yet research has made huge strides in changing the progression of the disease for patients. Ali Guthy’s severe symptoms were reversed with treatment, and other patients are experiencing similar outcomes. It’s a far cry from the dismal outcomes patients once were told to expect. The Guthy-Jackson Charitable Foundation plans to continue to fund more research into better treatment and a cure for NMO — answers that may help unlock the secrets to other autoimmune diseases as well.

I am pleased to report that 37 years later I am happily retired with health that is normal for my age and not complicated with MS. I miss the sight in my left eye but have adapted. I wake every morning first inspecting the vision in my good eye and thankful for it. I know now that Dr. Wray knew my left eye was damaged by what she referred to as a virus that was insidious and her objective was to save the right eye from the same fate.

I read about your Foundation in The Sunday edition of the Charlotte Sun with great interest and hope this story of mine will add to your database and give some consolence to those afficted with this disease. I am glad to hear some one has finally put a name on it. I am better informed by your Foundation and am eager to get involved.

Sincerely,

Kenneth R. Clarke