In 2008 she started breaking out with a rash on her face, pain, and swelling to her joints. First her pediatrician thought she may have lupus, which she tested negative for. In 2009 she went and seen a Rheumatologist., which she was diagnosed with JIA.

Alicia being the strong little girl she is, we thought the worst was over. For about a year and a half everything seemed to be going great, then all of a sudden she was having headaches everyday. Then that one day in Oct of 2011 she woke up in tears from her headache, and she said the room was spinning. She was vomiting uncontrollably, and had no coordination of her left side. Her dad, and I rushed her to the ER. The doctor took an MRI of her brain, and notice the lesions, right away he told us to go to children’s hospital in Denver. While we were there she was first diagnosed with ADEM, and was being treated with high doses of steroids. She also got an MRI of her spine, and the doctors noticed a long lesion down her spine. We were told that ADEM usually was a one time thing, and it wouldn’t happen again. After she was released we got a call from a neurologist named Dr. Schreiner. She said she would like to meet with Alicia and the famiy, and that we would also be meeting Dr. Bennett, which I may add are both great doctors. At the appointment we were told Alicia has a great chance of this happening again, and that she tested positive for a disease called NMO. At that point I was completely lost, and didn’t know what to do. So here we are now, new to all of this, and still a little scared, but staying strong at the same time, on the other hand; Alicia has been a champ through all this, and I am very proud of her. Alicia did get started on a medicine called Rituxan, which she will get every six months.

Alicia so far has been doing great. She has slight damage to her left optic nerve, and she still has numbing sensations throughout her left arm. It has been a scary ride for all of us, but we as a family are coming to realize to take it day by day, pray every night, and be thankful for all the good days she has, and hopefully will have from here, and out.

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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“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.

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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!!

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.

If you’ve heard of the Guthy Jackson Repository for NMO, you have almost certainly heard of Martha Mann.  Martha, a clinical research nurse based at the University of Texas Southwestern Medical center at Dallas, is the Repository’s remote enrollment nurse, traveling to enroll people who are not close enough to one of the ten collection sites to participate.  Since taking on that role in September 2009, Martha has enrolled 108 participants into the Repository.  46 of those enrollments have occurred “on the road” and 62 have occurred at carefully planned and executed “group draws” at events like the GJCF Patient Days.

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

Realizing the financial burdens that exist for many of these families, we’ve developed the 180 Medical Scholarship Program to honor these young adults who pursue goals of higher education.

http://www.180medical.com/scholarships

Eligibility

High School Seniors: To be eligible, a student must be a high school graduate (or graduating senior) and have been accepted to a two-year or four-year college in the U.S. Must plan on attending school full time (at least 12 hours) in the upcoming fall semester. Must have transverse myelitis, acute disseminated encephalomyelitis, neuromyelitis optica, spina bifida or a spinal cord injury.

College Students: To be eligible, a student must plan on continuing to attend a two-year or a four-year college in the U.S. in the upcoming fall semester. Must attend class at least 12 credit hours a semester and have transverse myelitis, acute disseminated encephalomyelitis, neuromyelitis optica, spina bifida or a spinal cord injury.

The Scholarship Award

Three $1,000 scholarships will be awarded to those who demonstrate perseverance, courage, good will and have made the best of their condition. These are one-time scholarships (not annual). Applicants are allowed to apply in subsequent years.

Deadline

We will begin to accept applications January 1, 2012. All application materials must be postmarked by June 1, 2012.

Application Process

To be in consideration for a scholarship award, you must include the following: - Application: : http://www.180medical.com/uploads/docs/scholarship.pdf - Physician’s statement of diagnosis - Most recent official transcript - Document verifying acceptance by college (or current enrollment) - Essay: pick an experience from your life in which you had to overcome an obstacle and describe how it influenced you today. 500 word maximum.

Send all materials to:

180 Medical Attn: Scholarship Committee 5324 W. Reno, Suite A Oklahoma City, OK 73127

Facebook

Join us on Facebook to stay up to date with all of the scholarship news. We will announce scholarship winners on Facebook in July 2012. http://www.facebook.com/180medical

Questions?

If you have any questions please contact scholarships@180medical.com.