It’s estimated at least 2 million people, world wide, have Multiple Sclerosis.

More women than men are affected.

The average age of on set is 35.

But there’s another disease of the nervous system, much more rare and often mistaken for MS, it’s called NMO.

Now, local patients are helping in the effort to find a cure.

“And I just kept coming in saying, I think this is strange. My arms feel dead and I did have a pain behind my eye. A horrible pain like a stabbing pain and I also had that down my spine,” said study participant Jody McGarry

Symptoms very different from the paralysis on one side of her body in 2006, that had doctor’s diagnosis her with Multiple Sclerosis.

Like Jodie, Michelle’s symptoms also got her a diagnosis of M.S. And also like Michelle, she had other symptoms.

“I had my left arm was not moving at all and I was dragging my left foot,” she said.

In the end neither women has M.S.

Jodie’s been diagnosed with N.M.O. Neuromyelitis Optica – and that may be what Michelle is also suffering from.

Only 1 in 100 MS patients have N.M.O. and because it’s so rare, getting the right diagnosis can be difficult.

“And then it can mimic MS, ah, quite, quite well. There’s a blood test that’s specific to NMO but it’s only positive about 70% of the time,” said Dr. Keith Edwards.

There are two, other indicators of this central nervous system disorder: patients don’t respond well to MS drugs – and they may develop other disorders like Sjogren’s Disease or Rheumatoid Arthritis.

Samuel Hughes and Morgan McCreary are hoping to keep those strides, coming.

Research coordinators with the Accelerated Cure project out of the University of Texas Southwestern Medical Center, they’re signing up research participants like Jodie and Michelle who agree to give blood samples to be studied and stored – available for researchers studying rare neurological disorders like NMO.

“A lot of it is bio marker research looking to see what is in the system of the patients that make them look different from other people,” said Samuel.

Finding better treatments or even a cure can take years and may not come about soon enough for Michelle and Jodie – but that’s okay. They’re looking at the bigger picture.

“So that I can help other people in the future if they have this,” Michelle says.

What’s more, the Coquitlam Little League Player had to be taken to Eagle Ridge Hospital to have a doctor look at his injury.

Surprisingly, his mom, Nancy, wasn’t that upset.

“It’s the only time he sat in emergency for something that was 8-year-old-boy related,” she says with relief.

The Reimer family has been through some tough times and the baseball mishap a few weeks ago was the least of their worries.

Riley has been diagnosed with a rare autoimmune disease, Neuromyelitis optic or NMO, in which the body’s own immune system attacks the optic nerves and spinal chord.

Two years ago, he was almost completely paralyzed from the neck down.

According to his mom, Riley dropped a glass in the bedroom one morning, and couldn’t speak. He was drooling and could only smile on one side of his face. It looked like a stroke, it turned out to be NMO.

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December 2011

Just before christmas Briannen got really bad tonsillitis with high temps and really not well i took her to ED where she was given antibiotics by new years she started to come right but was complaining about her legs hurting and i said it was just growing pains and she had been in the pool all day every day over the holidays.

On the 3rd of January her 11th birthday she had a pool party at home but as all her friends left she was still saying her legs hurt so the next day i said to rest and she did. When she woke up on the morning of the 5th she was really not well the antibiotics had not long stopped and i thought maybe it was coming back she just layed on the couch all day it was a hot day so i was contuning to fill up her drink bottle she did not move off the couch all day! at 4pm she said she couldn’t go to the toilet (she is 11 i don’t monitor at home what she drinks or when she goes) but i had known i filled it up 3 times that day, i took her to our local GP and he said we should go to ED so i went home to grab a few things and Brie went to the toilet and said some came out (the jury is still out on that one!! lol) so i cooked dinner and thought i would keep an eye on her when dinner was ready i could not find her she had taken herself to bed (not like her at all) she felt warm and had a little temp so i have her some panadol she went back to sleep at 9:30 that night she woke with really bad pain in her back i thought kidneys so i rushed her to ED she still said she needed to go to the toilet but it wouldn’t come out they said to me she hasn’t drunk enough water and i said any other day i would say the same but i have filled a big drink bottle up 3 times today and she drunk all of it after making her drink for an hour and she still couldn’t go and then they tried to IDC for an HOUR on my little girl i had enough it was 2am and then i was told i had to take her to the Mater Children’s Hospital in Brisbane city.

Once we arrived they rushed her in got a IDC in first go and emptied 2.5L out of her!!! by 5am in the morning i was told that she now had no feeling in her legs and she either had MS or spinal cancer!! mind you i had not yet slept and all i kept saying is i dont understand she just needs to do a wee!!. The next few days were a blur, so many doctors coming examine her and a MRI was booked for that afternoon by this time she has had lots of pain relief for her back pain and was just sleeping (she tells me she doesn’t remember each attach Thank God!!) The first MRI she was awake and could not stay still long enough but they did get a image of her spine where she was having the pain in the lower band and found a disk bludge and there may be cancer in her spine then Neurosurgeons coming to see me at 11pm at night telling me they are going to cut some of her spine out and going through her chest i just could not believe all of this was happening!! On the Saturday she was booked in for brain and spine MRI and LP under GA i managed to drive the 40 min home have a shower for the first time in days and pack i was told we would be there for 4 weeks minim. I was back in time before she woke up and this is the first of many heart breaking moments for me she did not wake up well from the GA it was her first time she looked at me with anger in her eyes and said “how could you let them do this to me” with out a thought i said “because i love you and i will do anything to make you better” as i hold the tears back and look around my friend and the two nurses had tears streaming down there faces, that was my first UH HA moment that i didnt care what i had to do i was going to make sure she got better (I would just like to add she is my only child and i can not have any more children so she is it i can not lose her) A few hours later the Neruo turned up and said can i see you out side please i was there by myself (something i have got use to over the last 12 months :( ) i walked out to a image of my daughters brain on the screen and i could clearly see 7 lesions on the lobes of her brain all i could think was tumours!! but then i was shown her lower spine image and was told her had Transverse Mylenitis and this is a one off thing mostly properly from the Tonsillitis and will never happen again. So my daughter was paralysed from the waste down after she was given 3 days of steroid infusions she had to learn to walk again and it took 4 weeks for her to be able to go to the toilet properly but to everyone’s surprise she made a complete recovery and i was soo thankful that my child recovered. When we left the hospital on the day we went home nothing was said to me that this could happen again.

We were home ONE week I got her all ready as school had just gone back she managed the first day back at school the next morning she woke up and said her neck hurt and i said maybe she slept on it funny and she is like i am really tired Mummy can i go back to bed and said of course darling we wont worry about school today. She woke at 3 in the afternoon said her neck was still really sore then she told me she had pins and needles in her tongue so i have rushed her back to the Children’s Hospital we were lucky our Neruo reg was in ED at the time and saw us he examined Briannen and could not find any clinical signs apart from her complaints he asked me what i wanted to do and for some reason i knew we had to stay he said ok i will take bloods just make sure nothing is going on and should be able to go home in the morning. At 8am he walks in and wakes me up and says Chelsea bloods are back all fine you can go home both of us looked at Brie and her eyes were open but she was not there!! her tounge was hanging out of her mouth and she could not talk her move her legs it was like she had a stroke both of us just looked at each other in horror and shock and he said but she was fine last night!! and that is how quick it happens my second UH HA moment when i was told that her brain stem was being eaten away so to speak they started steroid infusions straight away and then told me they were giving her IVIG at that time i did not know what i know now or care what they were saying all i could think was make my little girl better. Only just a few months before i lost a friend to a motor cycle accident whos brain stem was severed so i knew all too well that the brain stem did and how serious this was. I was also told that her first LP results showed that she had a very very rare Auto antibody NOT the NMO antibody but a cerebellum binding antibody!! They told me that they have no idea what it was and only 100 people in the world had it but the closest thing to it was NMO so that is where we got our diagnosis from. 3 days later and still no change then her heart rate started to drop on the 4th night and she was not getting enough oxygen she was going into early respitory arrest one of her doctors stayed with her all night i remember her saying with tears in her eyes at 2am i am sorry Chelsea there is nothing else we can do, she has to fight! i went down stairs in the dark of night and just cried and cried and cried i prayed and prayed and prayed mean while i rung Briannens father (we have not been together since she was a baby had gone away for work only 3 days after the first attack and not been back since and i dont have a mother so i am all on my own with just a few good friends and my dad to help me) i told him he was too far away to get back for at least a day. I cant even describe the feeling inside me that i felt that night and one that will haunt me forever but little did i know then it would not be the last time i had to feel that feeling!!! By the next morning from a miracle from the heavens she stabilized and yet another 3 weeks before she could walk and talk again we had a few more hiccups along the way with an emergency MRI on a day she just went “CRAZY” the only thing i got told after the LP is she had too much pressure on the brain. She made a full recovery once again and says she cant remember any of it!! and it was only a few months ago that i actually explained to her how close i was to loosing her.

She went back to school and was being a happy little girl i had taken her to ED twice in the next two months as she kept complaining of stabbing pains behind her eye but they could not find anything and she had no clinical signs so after 2 nights each admission we were sent home until April when she woke up one morning blind in one eye, i rushed her to the hospital where they confirmed optic neuritis she was given 3 days of steroid infusions again and another IVIG infusion. I was then told about this chemo Ritux and they wanted to give it to her the next week i weighed up the pros and cons and decided she was blind what else do i have to loose she got her sign back the day before her first chemo infusion and she had it weekly for 4 weeks i was told that 3 other children in Australia had it and had no attacks since and it will last about 12 months.

From May 2012 to January 2013 we had 7 more admissions for fatigue, pain, numbness, tingles, headaches, banding shuffling while walking and each time there were NO “clinical” signs so we were referred to Psychologist in the hospital and i was told on a number of occasions that she is anxious, worried, attention seeking (she is a only child for god sake) and trying to get out of school and after a few days of observations we were sent home each time with NO support even when i found a beautiful lady named Marlene with NMO and she said all of Briannens complaints were what a adult felt with this disease the doctors still didn’t listen to me!!

Until nearly a year to the day on the 10th of January we had our normal eye clinic appointment Briannen has slept all day the day before as we had been to Wetnwild for her birthday on the tuesday so i didn’t find it too weird since christmas her complaints were becoming more and more pain tired tingles how ever so many time i have taken her up there and nothing has happened so i decided after our eye clinic appt i would take her to ED to make sure Neuro could not see any clinical signs i was missing, we got to eye clinic at 8:30am she had not eaten since the Tuesday dinner and even turned down Macdonalds for breakfast on the way in (what child does that!!) she was trying to sleep in the waiting room on the row of chairs i was so upset they still made us wait 3 hours while i am saying she needs to get to ED she is so much pain in her head and neck finally we got there she slept the rest of the day in ED and woke up at 4pm when Neuro finally saw her, after full exam she was not showing any signs of an attack except she said she had double vision and we both put it down to the dilating drops from the morning. I was asked what i wanted to do and i was concerned because she had slept for two days straight and had not eaten they told me it may just be a virus and to go home and bring her back if no better in 3 days so i didnt listen to my gut and took her home we got home at 6pm she went straight to bed and didn’t want dinner i kept checking on her and at 9pm she had a temp of 38.8 so i woke her up to give her panadol and she opened her eyes and thought i was seeing things (i had only had one glass of wine lol) her eyes were inverted and facing each opposite way!!! she was not with it at all very simple was not aware of what was going on i put her in the car and after what i already know that was BRAIN STEM INVOLVEMENT i drove as fast as i could and all i could think was please please dont go into respiratory arrest on me please just hang in there baby till i get there i don’t know if i was looking at her more sitting next to me or the road!!! In ED i still had a stupid doctor telling me she could have a UTI i am like admit us Neuro will see us in the morning at 9am the same Neuro who i like very much who saw us the afternoon before walked in and all she could say was im sorry im sorry i said its ok i know how quickly this can happen mean while my daughter was there but not there she was simple not making sense like she was back in the 70′s high on acid by 4pm that afternoon it was confirmed another attack in the top of the brain stem by the saturday she could no longer open her eyes 3 more steroids and IVIG infusions were given mind you not for 30 hours after the MRI was done!! On the Monday morning at 6am i was woken to my daughter chocking and blue she could not even turn her head to vomit i jumped up rolled her and screamed by this time she could no longer talk at 11am that day she vomited for a second time half a bag of blood (to this day they still cant tell me why) one pupil was the size of a dinner plate the other a pin prick by 2pm she went into tacky cardie where her heart rate was sitting at 150 with a temp of 39.5 the rest of the day was a blur until later that evening her heart rate dropped to 50 and temp 34.5 the temp part of her brain was being affected and she was completely UNRESPONSIVE for 5 hours they only way they could get her to react at all was the sensor test they do on brain dead people, so here i find myself again for the second time in 12 months just crying a praying and feeling what no mother or parent should ever ever have to feel and i had two more times of nearly losing her in the next 2 and a half weeks i watched my daughter lay there and not move not open her eyes i was lucky if maybe twice a day get 3 words out of her and they were always I LOVE YOU the only way we could communicate was her to squeeze my hand i begged i pleaded that there was something else wrong she had finished treatment 2 weeks earlier i screamed i swore i just could not believe it and they kept telling me give it time until finally they did the second MRI and the lesion was twice as big and way way more sever than the first MRI, there are so many things they have done wrong and in which many investigation have been raised not only by me but other staff members of the hospital as she could not eat she was not FEED at all for 8 days until i realized not on a pressure bed for 8 days until i realized not on a drip either and during the 2 weeks she also got server jaundice in which they still cant explain to me. She could not move any part of her body. So with a very very sorry head Neuro coming to me and telling me the MRI results in which i said i told you so we went into ICU and received Plasmiaphrisis the next day and also the next two days after that by Sunday my daughter could finally move and talk to me and see me and i thank the heavens again!!

As i sit here and write all of this out and re read it i actually dont know how i have got through the last 12 months never lone the last 4 weeks i stay at the hospital with her the whole time i had 2 nights off in over 4 weeks but i should not be commended or told how great or strong i am for not only doing this but really doing this on my own because what other choice is there, all i can do is put one foot in front of the other and just keep going because she is my princess my angel my world and i am nothing with out her. I can not even begin to tell you that i am the most proudest mother that you will ever meet she is so strong and brave and had fought sooo hard to stay alive when all the odds were against her and she is what gives me my strength to get through every minute of every day and there is nothing that can ever come between a mother and the love they have for there child, so i am thankful to god for leaving her here to keep me grounded on days that i don’t think i can keep going, to get me out of bed when i just want to go to sleep and not wake up until this nightmare is over, when i haven’t slept for days on end because all i could do was watch her sleep and too scared if i feel asleep that i would lose her. So this is not my story or journey but that of the most remarkable little lady that i have ever met!!!

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In September 2010 my pain specialist referred me to the neurology center to see if they could give me the diagnosis I so desired. A mri revealed I had inflammation on my spinal cord but not on my brain but my neurologist still believed it to be MS. After my spinal tap was normal I was then diagnosed with Transverse Myelitis. Not happy but definitely relieved to have a name to go with all the symptoms and I believed I was on my way to recovery. After months of different medications, IV treatments and physical treatment I was still deteriorating slowly. My neurologist decided to do another mri on my brain and spinal cord. It was discovered that the inflammation on my spinal cord had gone from 2 vertebras to 4 vertebras in length. He had to consult with the Mayo Clinic which advised him to do lab work and look for a IgG antibody. On December 1, 2010 I was diagnosed with Neuromyelitis Optica. My response was “Ok now what.”

I was in such bad shape when I finally got my diagnosis that I was hospitalized from Feb. 4, 2011 to March 4, 2011. I was in agonizing pain and was beginning to slip into depression. I could not walk, write, open anything, and bathe myself just to name a few. While there I had intensive physical and occupational therapy which allowed me to go home an independent woman once again. Unfortunately I only had 6 months to be on short term disability before I lost my job, which I did. Sucks don’t it.

It’s been a little over 3 years since I’ve been diagnosed and I have had a total of 3 really bad flare ups. The bad thing about that is that my flare ups keep me down for 1-3 months at a time mainly having intense spasms, extreme pain in the back of my neck, burning in my legs and numbness in my limbs. I have permanently lost some vision in my right eye but other than that I’m ok. My neurologists believe that I need to begin taking a drug called Cellcept so that I can be pain free for longer period of times. It’s a drug that will suppress my immune system so I’m nervous about taking it but I will be starting it soon.

I’ve had many days when I wanted to just give up and die but I thought about a song I’ve heard many times in my life. God will not put more on you than you can bear. I believe in God’s word and I know my life has purpose. With that being said…I’m Good!!!

In my 30’s I went blind in my left eye twice and once in my right. Each time happened about a year apart from one another. The first time in my left eye it was like I had a bold black bar across my eye and I could only see above and below it. The second time in my left eye my vision closed in. A cloudy circle closed in and everything through that eye looked angelic until I couldn’t see anything at all. Both times in my left eye it took about a week for the vision to go and a week for it to come back. The first time in the left eye it came back without medication (I had no insurance at the time), and the second time I was hospitalized. When I went blind in my right eye it just went away instantly then came back. It was not a gradual process at all. By that time I did not have insurance. Blue Cross had cancelled my insurance claiming I had not revieled my pre-existing conditions because I was diagnosed at the time as having Lupus.

In my 40’s I was on my was to work and noticed when I arrived that my vision was funny in both eyes. But late afternoon I was blind in both eyes and admitted to the hospital where I stayed for 18 days. During that time I was given steroids for five days, then spent another ten days doing Plasma Exchange. They performed a number of different test and discovered that I have NMO and Sjogrens Syndrome…not Lupus. They were able to restore th vision in my left eye for the most part (when I look through my eye it is like I am squinting), and my vision in my right eye is gone. A month later I was back in the hospital because of inflammation in my spine and my legs were numb.

I have begun taking Rituximab ad hopefully that will keep me from having flares as often. I am recovering from having burning sensations in my right leg and spasms in my right to the point where I could barely move. I am feeling much better now.

If there is anyone who could teach a class on cooking, it would be Ha. The way food looks isn’t as important to Ha because she can’t see. In her 20′s, she was diagnosed with neuromyelitis optica or NMO.

Ha says the disease is similar to MS. She says it affected her optic nerves and over time, they atrophied.

But her love of cooking, which started in college, never diminished. She says she botch a few dishes in her early days, but once she could see people enjoying her food, it brought joy to her.

It was a joy that carried her all the way to the kitchen on the world’s stage as a contestant on Masterchef. Ha was the only blind competitor, and the first visually impaired winner of the show.

“When I’m cooking I have adaptive equipment that helps me just prepare food more safely. And I think a lot about using the other senses for clues on what you’re doing in the kitchen,” said Ha.

The Houston native stopped in Atlanta to offer advice to parents and participants of the Center for the Visually Impaired, letting them know that blindness is merely a minor obstacle.

“Everyone has their set of challenges. And I think if anything, I’ve been able to inspire people to pick things up and move on because of the challenge. I think that’s the bigger picture. And I think that’s what I was I was probably placed on this earth to do,” Ha said.

As the winner of Masterchef, Ha won $250,000 and a deal for a cookbook. The cookbook,Recipes from My Home Kitchen, will be out in May.

Two weeks later, my NMO test results were in. I’d tested negative again. You would think that would be the end of it, but no. The problem is that the NMO test is not foolproof. Forty percent of people who get a negative result test as a false negative. You can test negative and still have NMO. Fortunately, thanks to attending the NMO patient information day, I was able to arrange to get a consult with an NMO expert, one of two in all of Canada.

I met with the NMO specialist. After an extensive neuro exam, a review of my MRIs, the written reports that went with them and the results from all the tests I had just had done for the optic neuritis, my diagnosis was amended to NMO. When I heard the words, I was in shock. I’d suspected something wasn’t right with my MS diagnosis for some time, but getting confirmation that my gut feeling was right all along was still hard to believe. I was told that I am lucky to be alive and as able-bodied as I still am. Talk about a reality check! I don’t think it’s fully sunk in yet.

So what is NMO and what’s the difference between it and MS? The Mayo Clinic* explains: “Neuromyelitis optica (NMO), also called Devic’s disease, resembles Multiple Sclerosis in many ways. Both diseases affect the central nervous system. In both diseases, the immune system reacts against the body in what are often termed episodes or attacks. These episodes cause inflammation and destruction of cells. In NMO, the primary targets are optic nerves and the spinal cord, which are also commonly affected in MS.

There are a number of differences between NMO and MS. Patients with NMO often have severe, rapidly worsening symptoms. When the optic nerves are affected, blindness can occur. Likewise, when spinal cord cells are damaged in NMO, patients may experience paralysis, loss of bladder and bowel control and, occasionally, breathing difficulties that can prove to be fatal. In MS, initial episodes usually are mild and not life threatening. Over time, patients with MS may develop disabilities including paralysis (most typically in the legs), but permanent disability often tends to develop gradually and not as a result of sudden attacks as it does in NMO.

Patients with NMO usually have normal MRI brain scans early in the course of the disease, while the brain scans of patients with MS may show abnormalities. About 80 percent of patients with NMO have distinct, long lesions in the spinal cord on MRI that aren’t present in patients with MS.

The treatment options for these two illnesses also are quite different. MS is initially treated with immunomodulating medications that work by reducing inflammation. These medications don’t help patients with NMO and may actually cause more severe attacks than would otherwise occur. Patients with NMO respond to immunosuppressive medications, to prevent future attacks. Plasma exchange — where antibodies are removed from the bloodstream — is successfully used to treat patients who don’t respond to initial therapies.”

Five in one hundred thousand people have NMO, making me what a friend of mine refers to as a “rare bird”. I wanted to share my amended diagnosis with all of you because it is quite possible there are more of us rare birds out there in the MS community, who are completely unaware that NMO exists. While NMO is treated differently than MS, the neurologists I’ve spoken to believe it’s a variant of MS.

I lived under the diagnosis of MS and undergone extensive treatment over the course of the last 5 years. MS is a part of my story-nothing’s going to change that. I will continue writing here, working with the MS Society in serving the MS community and raising awareness for both MS and NMO. People with NMO may be rare birds, but when it comes to demyelinating diseases, we’re all in this together.

Date: 11/8/2013-11/10/2013

Location: Hotel Pipo Internacional

More Info: http://www.neurologiaenaragua.org.ve

She started losing her vision about 10 years ago after her optic nerve became inflamed because of an autoimmune condition.

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I was once a woman who felt she could tackle anything that came her way. I lost my husband 13 years ago and had to go out and find new employment. He was a Pastor and I ran our Christian school. After being 30 years out of the work force it was quite an adaption, but I knew God was with me and would lead me along the way. I found a job that a dearly love working for different doctors everyday. It is always interesting and I have learned a lot.

It was February 2010, I started having severe back pain to the point that I had to stand in the shower all night with hot water to get any relief. That went on until after two days I couldn’t stand it anymore and I made an appointment with my doctor. She gave me a pain shot and some medication that seemed to help. The next day I found my left leg was weak and I couldn’t walk without a cane. She immediately ordered some MRI’s and sent me to Baptist hospital emergency room. After seeing about 5 different doctors they ordered more MRI’s and they still could not tell me what I had. I took 5 IV steroid treatments and they sent me to physical therapy and I recovered quickly. They dismissed me without a diagnosis. It could be Adem’s, Devic’s, Multiple Sclerosis, or Transverse Myelitis. Either of these are auto-immune diseases, as are Type I Diabetics, Celiac, Crohn’s, Gillian-Barre Syndrome, Myasthenia Gravis, Psoriasis, even Rheumatoid Arthritis. I knew it wasn’t MS, but didn’t know about the other things mentioned, so we started out with investigating all the others. We continued our investigation as I went back to work with weakness in my left leg. All the time, I was thinking this was a one time thing and I would go on with my life as normally as possible.

The second attack hit with a vengeance and left me paralyzed from the chest down. I was taken to the hospital and given steroids again for two days before my neurologist came into the room and said he wanted me to see a collogue of his in Dallas, Dr. Greenberg. The amazing thing was that my daughter had been researching on the internet and had come across Dr. Benjamin Greenberg’s name the night before. They loaded me (literally) in the car and drove me immediately to Dallas. We didn’t think about how we were going to get me in and out of the car to his office and then back in the car to the hospital in Dallas. We manage only by the help of some of the valet people that were there.

I literally had no feeling from the chest down, no bladder or bowel movement, no ability to move anything from the chest down. They continued my steroid treatment and added plasmapherisis treatments. I was able to move toes on my right foot and they started physical therapy. I was encapsulated in a machine that forces you to stand and my blood pressure would drop and they would have to remove me. They worked with me using a sliding board and a wheelchair. After further discussion about my case they chose to do another round of plasmapherisis treatments and by the end of three I was moving both legs. They gave me four more treatments and worked with me and my huge success was walking to the door of my room with a walker. My legs had turned to Jell-O after being in bed for two months. My daughters would take turns coming to check on me during the weekend.

My journey has been long and hard that I can’t deny, but I am still determined to gain as much back as I can until they find a cure. Many are worse than me, some have lost the ability to walk, or have lost their eyesight, or both. Something must be done to stop this debilitating disease. Everyday we live in fear thinking when the next attack will start again, as each one robs us of another ability and nothing can stop it from doing this.

This has not only affected my family, my work, and my friends. I no longer have the freedom to go on trips or vacations that require a lot of walking. I no longer can climb a ladder to change a light bulb. Things that I used to do can be done no longer.

This disease doesn’t just affect people my age, but children as well. We must do something. I would not want anyone to go on this NMO Journey, but now that I am here I must get the word out to others.

Many times it is mis-diagnosed as MS and this is NOT MS! MS does not strike rapidly. It is a slow process. NMO can happen in a matter of days. The sooner you get the correct treatment the more you will regain. If you have a loved one that has had rapid onset of paralysis, and/or blindness get them immediately tested with the IgG test. It took them about two weeks in Dallas to get the results.

I am back at work with a cane and have at times severe tightening of the chest and back area to the point of a pain level close to 9. We call this “banding”. My journey with NMO is not over, but I am hoping that a cure will be found soon. Research is being done through the Guthy-Jackson Foundation and UT Southwestern in Dallas by Dr. Greenberg. Please consider sharing my story and supporting this work. People of all ages are being affected by this disease and only through your help and support will we find a cure.

Fast forward to 2012. I am trying to set up my family doctor to work in conjunction with my MS specialist. He says, “Only if you agree to seeing them first. To set a new baseline.” After agreeing, I travel to Omaha, NE to the UNMC MS clinic and have the usual gamete ran: MRI, blood work, and visiting with the neurologist. And then the doctor informs me, “I believe you do not have MS, but have NMO. ” Now, after being diagnosed as MS for over 10 years, going to Mayo Clinic where Dr. Pirko informed me I have a forme fruste of Multiple Sclerosis, I now see that it has been NMO all along. And I don’t know where to go from here. I guess, I will just wait and see where it takes me.

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Review the preventative and acute options for Neuromyelitis Optica and underline the importance of initiating treatment early;

Discuss how this condition interfaces with psychiatric conditions and how the Psychiatrist can select antidepressants and mood stabilizers to optimize both psychiatric and neurological outcomes

Date: December 18, 2012

Time: 5:30-730 PM

Location: Best Western Lamplighter Hotel

Give it time. When Guthy was diagnosed with neuromyelitis optica (NMO), she was given four years to live. Once the impact of a diagnosis has lessened, step up support to your loved one, Jackson says. “Be compassionate, and don’t put them in the category of a victim.” Know that the patient may need time to let things sink in, too. “Let them get to a place of comfort on their own terms,” Guthy says. “It took me a good year and a half.”

Learn all you can. When dealing with a medical problem, especially a rare one, it’s about getting people to care and getting past fear. “Don’t feel helpless,” Jackson says. “Start educating yourself.” When she initially couldn’t find information about NMO, she and her husband, infomercial giant Bill Guthy, launched the Guthy-Jackson Charitable Foundation to fund research and raise awareness.

Cultivate community. Jackson forged links between researchers and patients. Ali Guthy has helped share her experience with NMO through fundraising for multiple sclerosis, which is closely linked to NMO, so she could “tell our side of the story.” If ongoing research or fundraising efforts don’t speak to you, find out if there’s an area that needs more attention. “It’s about saving each other, and the connectivity,” she says. “How do you deal with it, and what do you do to affect a different outcome for yourself?”

By Sierra Tishgart

CAUSE: Neuromyelitis Optica (NMO) is a rare and incurable autoimmune disease that can cause blindness, paralysis, and seizures. When Ali Guthy was diagnosed at age fourteen and given four to six years to live, she and her family took action. They created the Guthy-Jackson Charitable Foundation, which enables over fifty of the world’s leading doctors from twenty-five countries to conduct research and find a cure. Now, Ali has co-authored a book with her mother to bring this disease into the public eye.

GET INVOLVED: You can support Ali’s foundation by giving blood, making a donation, or purchasing her book.

“My first symptoms started when I was thirteen, when I was in eighth grade. I had a one-month period of nonstop nausea, and I lost weight. I went to a series of doctors, and no one could find anything wrong with me. Being thirteen and tall and skinny, people jumped to conclusions that I had an eating disorder. Those symptoms went away after a month, and then a year later, I started to lose vision in my left eye. My family got the diagnosis a week after the onset of symptoms that it was Neuromyelitis Optica, or NMO. It’s an autoimmune neurological condition—your own immune system starts to attack your body. It can cause blindness and paralysis.”

“I made the conscious decision not to know what my diagnosis was. It was my first year of high school, and people started telling me I couldn’t do certain activities that I wanted to, like playing tennis. I figured I’d rather not know and continue on with my life. But mid-sophomore year, my mantra changed from ‘ignorance is bliss’ to ‘knowledge is power.’ Once I discovered what I had, then I start going full-force to try and help people as much as I can. NMO is currently incurable, and when I was diagnosed, the doctors said that I only had four years to live.”

“My mom started our foundation right after my diagnosis, and I got involved later on by reaching out to other patients. We host a three-day NMO symposium, where we gather doctors to talk about progress and treatments and host patients to talk about alternative treatments. The patients can interact with researchers and ask questions.”

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Finally, in February of the following year, I received the news that I had the very rare NMO. I was devastated, but looked toward treatment and hoped to re-gain a “some-what” normal life. Unfortunately, more bad news came in March with my triple negative breast cancer diagnosis. With that news, I continued with endless doctors’ visits, my Rituximab treatment for my NMO, plus a double mastectomy, breast reconstruction, chemotherapy and radiation treatments for my breast cancer. I have been “wiped out” for almost three years now; “drug through the ringer” as my family commonly says. I continue to struggle with permanent nerve damage, and intermittent bodily pain from the NMO. I also battle with depression and anxiety. Having two major illnesses is overwhelming. Due to the number of doctor appointments, I am unable to hold a job. This too is hard for me, as I have worked since I was 15 years old. I deal with lasting effects from both of these illnesses while keeping house, taking care of my two children and maintaining a marriage of 17 years to my husband, Darren. Darren and I try to keep the kids, Cassidy (13) and Colton (9) highly involved in sports to see to it that they have a sense of normalcy in their lives. Throughout this entire situation, I always try to remain optimistic and positive. I always try to smile, laugh, and never complain. My family does a great job helping me get through tough times by attending doctor appointments, treatment sessions, and just being by my side to offer a shoulder to cry on. My husband, Darren has been one of the most amazing individuals in my life. He holds down his job as Dean of Students at a High School, shuttles the kids around to sports activities, coaches various youth sports teams, while seeing to it that I feel comfortable and well to enjoy daily living. Even before my breast cancer diagnosis I was (and still am) dedicated to Breast Cancer awareness, attending charity events (Bras for a Cause), Breast Cancer walks, and I inform every individual I encounter about the importance of early detection. Our family is a poster family for Breast Cancer awareness by proudly donning Pink Wear. Colton, Cassidy, and their teammates show their support by wearing Pink wear during their games. Now that I have found the Guthy-Jackson Charitable Foundation I am able to pursue NMO awareness. I am excited to learn more about my NMO, and hope to participate in the efforts to find a cure. My Pink and Green goes well with one another, and I look forward to continuing to share my story with others.

i became ill in 2008. I got into the pool and had no feeling on my right leg as to hot or cold. Only symptom at that time. Went to doctor, MRI’s done I was diagnosed with a spinal tumor. Went to two specialist (DUKE and MUSC). Both neuro surgeons stated they did not feel it was a tumor. Neither was sure what it was. My long ordeal then began. I have been tentatively diagnosed with the following: neuro sarcoidosis, transverse myelitis, MS, and just unknown. I have been on steroids for the past 4 years, which has
caused major damage (osteopenia, steroid induced cateract surgery, weight gain from 136 to 200. Buffalo hump, etc). I have loss of sensation below the waist, tight band around my middle, numbess and tinglening in both feet, extreme fatigue, depression. etc. Can’t tolerate heat, neurogenic bladder, new numbess in right hand. I know I meet the criteria of NMO (spectrum disorder) which states limitaton to spine, which that seems to be my problem. I have started Rutixn without any problems. However, I have had new lesions for no reason and whith NMO the damage is usually permanent. So far my is. I am not able at this time to use my left leg and think maybe after breaking my ankle and having pins put in, I ma have a reaction to them, I will have to have the removed and hope I can regain my walking ability Thank you for your time. Please if anyone has a similar situation, let me know. Candy