Devic's and NMO Worldwide Support 

hi my names jay and im 37 years old.Ive had devics since march 07.To say im struggling with my devics would be an understatement! Im at the point where i now need 2 have contact with people in the same situation as my self!just to compare notes with and to give each other support when times get so bad we think we are about to lose our minds.Ive had 3 major relapses in the last year and have problems with my hands and feet.My biggest burden of all is the head pain that closes down my sight and reduces me to vomit with the pain.so anyone in the same tunnel as me please get in touch x regards jay

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I am 51 yr old female;diagnosed with MS back in 1990. Through the years developed vision loss in the left eye which has been not functioning since 1994. Have lost vision in both eyes several times, with some recovery in the right. Have been on Imuran for over 9 years. Treated with IV steroids for exacerbations. Have been wheel chair bound since 1998 and bedrideen since 2004. Require bowel program every other day, ( mini enema). Foly catherter since 1992. multiple UTI's. This year, have had a attack every month, treated with IV steroids, but not responding as I once did. Plasmapherisis attempted for the first time with no postive results. So now Rituxamb is on the schedule soon; long appeal process with Ins Co. to finally approve. Neurogolist gave me the scary adverse reactions that are a possibilty. Wondering if aynone can relay any expericences with this Drug.

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I have been diagnosed with Devic's Disease and Picks Disease at the same time. After I was diagnosed my ex would abuse me in any way he could. With help I am removed from that situation, but continue to live with these diseases. All my friends went their own way. Please contact me if you would love to chat.

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Hi, My name is Rose and I was diagnosed on April 14 2008 with Devic's. There are only 2 people in the area I live with Devic's. I would like to correspond with someone else who knows what it is like. I am a little scared at rhis point. My email is rosenedved@yahoo.com Thank you

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Hi my name Assunta and I have been diagnosed with Devic's Disease (NMO). It all started seven years ago when I started to loss eye site in my left eye and was told it was Optic Neuritis. Over the years my eye site returned but not completely. This winter I had started to have a pain in my shoulder, the doctors told me that it was frozen shoulder and they started a treatment. I started to have tingling in my fingers and leg on my right side the after a few days I was paralysed in my right arm, leg, torso and tingling this time in my fingers and leg on my left side. My husband brought me to the ER and they recovered me in neurology, where after blood tests RMI they diagnosed NMO. They told me that the eye site problem that I had 2001 was the onsite of NMO not diagnosed. They started me on IV methylprednisolone to stop the attack. I started occupational therapy and physiotherapy plus I take anticonvulsant medication for the tightening of arms and legs. The paralysis is gone, but I still have numbness, burning and fatigue. Here in Italy (I live in small town) this disease is very rare and it is a miracle that it was diagnose and I thank God everyday for this very special doctor. My family has been great, especially my husband, but as Judy from California said " I really like to talk to someone who understands the nerve ending burning pain, or all the other discomforts that goes along with this disease. I would love to share stories, both humorous and serious".

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I am going through a very acrimonius divorce. I have 3 Children Charlotte 14years Tanya 13years and Courtney 11years. It is affecting my children terribly. My husband is still living at home at the moment he is very manipulating and a control freak. He does not recgonise that i have anything wrong with me. It is mental cruelty that has been going on. the divorce is now in the final process. I would just like to be able to talk to someone who actually understands how i feel and can relate to it. and not just tell me i am putting it on. I am on rebif injection 3 times a week, these seem to help as it is my right side that is affected. After about 3 oclock in the afternoon my right leg does not work very well. I look forward to here from you to give me a bit of sanity. The e mail address is my mums who lives in the bungalow next door as i can not use my computer until my husband has left. Lyn.

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I was diagnosed with Devics 4 years ago, after an initial diagnosis of MS. I am a mother of two children 8 and 6. There is nobody in Adelaide that I am aware of diagnosed with Devics, so I would love to talk to someone who lives with this disease everyday.

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Diagnosed with Devic's in November of 2007. Blood test showed anti-bodies to Ig G NMO. Became sick in October of 2007. Had terrible exacerbation in December 2007, and am lucky to be alive. My biggest problem are spasms so severe that my whole body goes rigid, and I am unable to breath or talk. When the spasms begin, I am prevented from calling for help, and I am prone to falling even from a wheel chair. My doctor and I have come up with a combination of Tegretol, Gabapentin and Backlofin that seems to control the spasms. I am also experiencing a lot of itching around my neck and scalp. Does anyone have these symptons? My eyes, hands and feet have been affected.

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Hi, my name is Zorica. My mum was diagnosed Devic's a month ago. She has had neuritis retrobulbaris for 10 years. I'm still new to this and I'm trying to get as more information as possible. Since there were no patients in this area who had same diagnosis, information is restricted. Even doctors don't know much about this. I would like to talk to someone so we could help her. Thanks a lo.

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I HAVE BEEN DIAGNOSED WITH DEVICS DISEASE. I FEEL VERY ALONE AS THIS DISEASE SEEMS TO BE VERY RARE AND EVERYONE YOU SPEAK TO HAS NEVER HEARD OF IT !!! I AM MARRIED AND HAVE TWO CHILDREN. I AM NOW HOUSEBOUND BUT LOVE THE NET SO IF THERE IS ANYONE OUT THERE THAT WOULD LIKE TO GET IN CONTACT WITH ME THEN PLEASE DO.

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I was diagnosed 5 years ago with NMO, after almost 4 years of Doctor visits and symptoms. Being at the 5 year mark after diagnosis has made me want to forge on in my life. It all started when I lost my site completely in my left eye and was told it was Optic Neuritis and most times the site came back. Afew days later, bad headache and lost site in my right eye. The right eye came back and 8 months later was totally blind again. Right eye came back and still on track with my career. It happened a few months later and right eye came back. MRI of brain done every time, but no lesions to show MS. Lost my site completely in March 2003 and collapsed to the floor that June, not being able to get up. Was sick of steroids, both IV and oral. A Radiologist diagnosed my condition as NMO. The Doctor at the time had never seen anyone with it. My Opthalmologist got me into the University California San Francisco MS Center on July 31st. I was now in a wheel chair paralyzed in my left arm, both legs and torso, using a foley catheter and could not produce bowel movements. TODAY, I can see out of my right eye, the paralysis is gone and bodily functions are working. I do have numbness, burning, fatigue and some other problems, but basically doing o.k. I was/am part of a trial using a drug already on the market, Retoximab (Retoxin). I have infusions every 9 months and it appears to be working, although, the study cannot conclusively state that. No placebo drugs can be used due to the rarity of this disease. I would urge anyone with this disease to ask their Doctor about this or check with the Mayo Clinic. Currently , I am no longer a career professional and enjoying being a Grandmother. I am blessed to have a very supportive husband, famil and friends, but really like to talk to someone who understands the nerve ending burning pain, or all the other discomforts that goes along with this disease. I would love to share stories, both humorous and serious.

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Hi Gayle, I was diagnosed with MS in the spring of 2000, and just recently had the diagnosis of Devic's, when I suffered a new exacerbation in October, that is still lingering... I am back to work, as a bartender/waitress!!!!! I am feeling better emotionally and physically now, although, not completely up to par. My meds have been changed from Rebif to prednisone and azathiaprine. I have been to your site, but never contacted you, and now I think it's time. I don't know anyone else with Devic's, nor did I ever hear of it until my diagnosis. After an MRI, and a new 1cm lesion at the top of my spinal cord, I was given yet another test which was sent to the Mayo Clinic, and confirmed my doctor's suspicions of NMO. So, that's it for now... I am frightened by what I read on the internet, but when I feel strong, I swear that this is not going to bring me down!!! Thank you for posting this site, Gayle. I feel comforted knowing that I am not alone. I am a married mother of 2.

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Hi, I am not the person who has NMO, but one of my very close friends does, but I am trying to find positive web sites and others that she can email when she is finally diagnosed. Amanda is a beautiful 41 year old, with 2 lovely boys. November 2007 saw Amanda begin to get ill following a routine eye check, when she had a small area that she could not see out off. Having just been in Addenbrooks Hospital, she is now home and awaiting the final blood tests. Her sight in one eye is like looking through a doily, she has tingling in her fingers and some loss of sensation in the abdominal area. Amanda has lots of fears, as do I and her other friends and family. If there is anyone who can relate to her, please email me and when she's ready and has been told exactly what type it is and have the confirmation that it is NMO and not MS, then I can pass details on, as for all the love in the world and the best of intentions, no one can understand what she feels unless they too have been there. Please help. Alison

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Was a full time accordion player before Devic's hit me about seven years ago. I run a music agency. Still learning about Devic's, adjusting to it. Would love to correspond with anyone else who has it. Don't know anyone else who has it.

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I am 32, female with 2 children, a son 11 and daughter 5. My parents are from the West Indies. I was diagnosed with NMO a month ago. Feel quite alone going through this illness, although I have support from friends and family, they cannot relate to me and its no suprise as I am confused as to what I am going through. Over 18 months ago I suffered severe 18hr headaches, that led to sight loss and involuntary vomiting. Through MRIs of brain and optic nerve, inflammation was found on both. No diagnosis, but had tests for MS, ON, sarcadosis and lupus. Went on Azathioprine and a tapering course of steroids. 1 year later, no check ups after 6mnths and my leg starts burning, it went numb from ankle to anal passage, at that point, I saw a private neurologist who said I had a relapse and inflammation had spread from brain to spinal cord. Personally, I thought that was impressive as he'd given me no tests to determine that outcome. A day later, I attended A&E and was admitted for 2 weeks, stopped walking, although strength resumed after a course of PT. That was June 2007. I am mobile, even started wearing high heels again. Sight has resumed at least 85-95% in both eyes. I suffer mainly from back pain, particularly sitting, standing or when lying down. Would love to hear from other affected by Devic's from UK or across the globe.

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I have been diagnosed w/CFS for 12 years but the symptoms did not completely fit. I have had pain and numbness on my left side. From the beginning I have had sudden hearing loss. Since the begining of 2007 I vision has varied from 20/15 to 20/200 and back again. I have had tons of tests. My spinal tap tests have been fine. I have some lesions on my brain as seen on the MRIs. I don't even understand the MRI of the cervical spine well enough to explain it. I had a vision evoke test which was severely bilaterally abnormal. None of my doctors seem to have any idea what to do. I am the one who did research and found that devic's matched most of my symptoms and tests. January 22 I am going to the University of Virginia MS Clinic for a 1 hour visit. I don't know what to expect. I am in terrible pain and the fatigue has me in bed most of the time. I would be interested in anybody who has a story similar to mine or who has any suggestions.

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Ich habe das Devic-Syndrom seit 8.9.06, diagnostiziert im Dezember 2006. Die Angst wieder einen Schub/Attacke zu bekommmen ist sehr groß. Wie kann man mit dieser Angst nur leben?

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I was diagnosed with Devics two weeks ago, I have been having problems for quite a few years now and they were finally able to find out what was wrong. I think they were expecting me to be relieved but I wasn't. But I guess now that they know what it is maybe they can find the correct treatment. In my free time I try to hang out with friends and try to enjoy life. I like to smile and laugh a lot it makes me feel better. I try to take life by the handles and take what was given to me with a grain of salt and try not to dwell on it. I am very outgoing and outspoken, but also fear people judging me. I do try to not let that bother me but sometimes it gets the worst of me. I don't like to let people know that I have an illness so that they will like me for who I am and not dislike me or fear what may happen if they aren't my friend or aquitance. I plan to live a very fullfilled life and enjoy every minute of it!!!

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I am married and a grandma. I drive using hand controls and walk sometimes quite far enough thank you! I gave up teaching teenagers French and Spanish because of the toll on my health. I am a happy person and I sing in a ladies chorus at a competitive level. I love word-play and my IT skills are on the up!

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Hola, perdí la vision de ojo derecho el 23 Octubre 2007, me diagnosticaron Devic el 5/6 de Noviembre, me afecto al ojo derecho y la paralisis desde el ombligo hasta las extremidades inferiores, no controlo esfinteres. El 6 me iniciaron tratamiento con metilprednisona, por 5 dias, luego de 2 dias me hicieron plasmaferesis por 4 veces reemplazandome 41 unidades de plasma. Ahora he empezado a mover, primero el pie izquierdo luego el 23 de Nov. el pie derecho. Que posibilidades tengo de volver a caminar o ver con el ojo derecho. El tratamiento es muy costoso y si hay instituciones de ayuda para esta enfermedad??? Gracias.

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I've been dealing with problems for 3 years. Gained 40 lbs, which bothers me as much as all the other problems. I have a wonderful family who have hung in there but feel like they are tired of this as I am. We are all ready for me to get better?

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I am a 45 year-old wife & mother of 2 daughters- 22 and 16. I have had Devics since I was 15 yrs.old,I was diagnosed with a new disease then called Anarexia Neurosa.-"oh brother". Then when I was 17 -MS,then 7 or 8 years ago-Devics. Waiting for an email or letter,

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I was diagnosed with Transverse myeltis at 19 and optic neuritis at 25, and was then diagnosed with MS. Just 4 moths ago I almost died and they found out I had devic's disease. So I have had a long 9yr journey and I am looking to talk to someone who has been through similar illnesses'.

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Recently diagnosed Devic: recurrent myelitis. At this moment doing a cyclophosèhamide therapy.

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I was diagnosed as a child. There were two different occurrences. The first affected my eyes (age 4) and the second affected my legs (age 7). I have been in remission ever since but have recently been diagnosed with two other autoimmune disorders. I remember what Devic's is and feels like. I am facing new challenges in my life now and would like to be a contact on your web site.

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Hi I'm Len. I was diagnosed in February 2007, but my problems started back in 2004. Jan 2nd to be exact, because I woke up and I had no vision through the bottom half of my right eye. I figured I really most have poked my eye good in my sleep. I got into see an eye specialist the next morning. I figured it was just something silly and would go away. My wife was scared my testicular cancer was back and it had spread to my brain. I was in remition then for 7 years and thought it unlikley. The specialist told me after a few tests that my optic nerve was half dead, but I should'nt worry this was probably all I would lose and everything would be great, but he was going to send me to the eye centre here to see our neuro- opthamologist. The last one in our province. Well he said I had optic neuritis but I would be ok. I was starting to have severe migrain like headaches then too and was told it was a coincidense and they'd stop. Over the next couple months I lost my remaining vision in the right eye and the headaches and eye pain were causing me to miss work, which I just got promoted too a new position that I spent working 17 years to get. Well,after seeing a neurologist who was supposed to be the best in the city, because by the the neuro-opthamologist left for the states too. He told me it was all in my head and I need a shrink. I told him I know it's in my head and I needed his help not a shrink. Well after 3 years of begging to see other doctors, even flying out of province to see them at my expense I finally found one back in Saskatoon who listened to everything I been going through everything I had tried to make the pain easier, and by now I was having trouble with my hands and legs. I couldn't play drums or guitar anymore. I couldn't take the dog for a walk. And yes my sight was going in my left eye now as well, I'm currently at 20/200. I can't work anymore and I loved my job and my company. I'd get paid for 37 1/2 hrs a week but I'd work 50-55 without a penny in overtime pay I didn't care. I worked 18 months in extruciating pain in a job where every detail was crucial from the crossed "T's" to the dotted "i's". The doc did a 2nd MRI and this time to include the spine and sure enough there it was. He says my Devics is progressive and agressive and we just went from MS-Contin to PMS-Hydromorphone for the pain, which is helping a little better. On the good days, which are few I take advantage of them and make sure my family and I have a good time, because it's they, who this effects the hardest. My moto is, find humor in something everyday because it truley is the best medicine. And if means someone else I love doesn't have to do through this and I can for them then that's why I've been put here. I would like to talk to others, about anything, even their dogs or cats if they like. So I hope we can talk. Len

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I am a married 49 yr. old female with a 20 yr.old daughter and a 22 yr. old son. Had my attack of T.M. in '93 and it has been quite the challenge. Would love to connect with others who have gone through this similar TM journey!

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Hi, I am looking for people who lives in Spain to talk with them about the disease. My mother has Devic´s and we want to know which treatments are you taking, because there are a lot of things that we are not sure if they are right or wrong. Thanks Hola, estoy buscando gente afectada por esta enfermedad que vivan en España. Los médicos no hablan de casos parecidos al de mi madre aquí en barcelona, y la información que tenemos al respecto es realmente confusa. Creo que sería provechoso para todos establecer un contacto para poner en común los tratamientos y pruebas que se están realizando. Gracias

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Hi! Well here goes... Diagnosed June '07 after about 20 years of 'if and maybe' from consultants and GP's about this and that. Finally got one to give me an MRI and there they were, one in the head and one on the spine. Yes, I did finally get the birthday cake! In a 'sick' sense of humour I am relieved to have soemthing that we can put a name to rather than hypochondria or just being mad. (I am that anyway without all the rest)! ;-) I am mobile and able bodied - you would not recognise the problems unless you saw me for a long time or knew what to look for or I was having a bad hair day. I am not working at present and finding that this helps me have more energy to cope with things and get myself into some sort of order. It takes a bit of getting used to, finally seeing and understanding what an 'idle or low energy day' really means and why. Glad to chat with anyone, anywhere. (May take a day or two to reply if my wrists are playing up. Yep - got RSI / Carpul too.) Cheers folks, welcome any conversation casual or serious. Martin..x.

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HOLA, SOY DE CALI/COLOMBIA, EL DIAGNOSTICO DE NMO SE REALIZO HACE 3 MESES, INICIALMENTE TRATADA COMO ESCLEROSIS MULTIPLE. NECESITO SABER SI A;LGUIEN TIENE EXPERIENCIA ACERCA DE RITUXIMAB EN EL TRATAMIENTO DE LA ENFERMEDAD DE DEVIC, YA QUE EN EL SISTEMA DE SALUD DE MI PAIS, POR SER UN MEDICAMENTO TAN COSTOSO, HAY QUE JUSTIFICARSE MU BIEN.AGRADEZCO CUALQUIER INFORMACION QUE PUEDA COLABORAR A MI CAUSA. fabian_ramirez@telesat.com.co farayusu@hotmail.com

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Just diagnosed with Devic's Disease a week after being told I had MS. I am a wife and mother of soon to be 10 year old. I live in Upstate New York above Lake George.

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I am happily married to a wonderful man for almost 10 years. I have 2 awesome children ages 7 and 8. I have had MS for a few years. I have just been added the diagnosis of Devics disease. I first had optic neuritis and was treated with IV Solumedrol. 7 weeks later, I went to work with my feet feeling like pins and needles, 8 hours later I was numb from my waist down and the diagnosis of MS. I have had over 8 relapses and now I am told that I have Devics disease and that is why I had so many relapes. I would like to hear from someone that has the same issues. I am really confused on the information that I just can't find on the internet.

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Hi I’m Ian, I have three children, Ian, Rebecca and Gareth my wife is named Mandy, and they have all been fantastic, I think family is important at times like this. My story has been lived by most Devic’s suffers, in twelve months I was diagnosed with a stroke when I lost the use of my right arm and leg, back home, back in hospital lost controlled of right arm, right leg, tightening of my stomach and loss of body functions (trying to be polite) after tests M.R.I, x-rays and needles in places I didn’t know I had, I was diagnosed with a brain tumour. After medication I went home, most of my problems were back to almost normal and after hard work I returned to my job. After another few months I was back in hospital total body weakness and extreme pain in my left shoulder, I was told I had a frozen shoulder with in four days in a hospital bed I was paralysed all down my left side and all my old problems returned, shortly after I was diagnosed with Devic’s, I’m back home now feeling normal ( ish? ) spending time with my grandchildren Ethan four and Shannon one and a half. I live for today and try not to worry about tomorrow, what will be will be. I’ve lost a lot of confidence and fined communicating hard so be patient. and that’s basically me in a nut shell. Hope to hear from someone soon.

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I was diagnosed in 2000 with ms. My brain mri was negative but the c-spine showed lesions. I progressed to paralysis of both legs and bliondness in the right eye within the next 7 years and recently had the blood test which confirmed I have Devic's. I have had severe muscle spasms of the legs in the past and more recently in the right hand and arm. This spring I had pnuemonia and spent a few dys in the hospital with that. I have quit taking Copaxone shots and have started prednisone and will start taking imuran. I have had 5 ivIG treatments. I am feeling well now and just had a woderful time at my sons wedding. I am very blessed with a fantastic family and great friends. I would like to hear from others dealing with this disease.

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NMO and transverse mylitis

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My daughter Erica has recently been diagnosed with Devic's Disease. She first lost her vision 2 years ago, and no one knew why. Anyways, she just finished chemo last month. She did 4 doses of Retuximab. We will be getting her blood checked every month, and hopefully she will be alright for a year. We will find out next month if the chemo worked because she has been hospitalized every two monthes with weakness in her extremities. I hope your chem went well. What kind did you do and how much?

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Hi! I was moving into my final semester of graduate school, my internship and a new career in mental health counseling...when a big interruption occurred...just like so many of you. My name is Marie. I am a single mom with a daughter 27 - she's in San Francisco, and a son 17 - he's a junior in high school and an awesome drummer with a rock band. Over the New Year's weekend I suddenly lost my vision in my right eye. Optic neuritis. Then mid-Feb 2007 I had an attack in my spinal cord; by mid-March my Mayo Clinic blood test came back positive - NMO. Wow....I am reeling from all the changes in my life and no idea what is next. Fortunately for me, I have been on an unpaid lave of absence from my job as a science teacher. It's provided the time I need to heal and adapt. I was hoping to start a private practice...yet life interrupted...I may return to teach one more school year and see what happens next with my body. I was started on Cellcept once the diagnosis came in. I am up to 4000 mg/day and my white blood cell count is still at 5500; I expect they will up the dose again to drive it down to 4000; fortunately I have not had any big side effects to Cellcept....yea! I am also having monthly steroid IV treatments; I am also taking Celexa for depression. I tried to not take an antidepressant yet it was too difficult....as you can probably imagine. My current condition: numbness in my arms, torso, and legs; lost fine motor skills mostly in my left hand and some in my right hand. I have regained a lot of my strength in my hands. My fine motor skills are improving yet I still can't type right. It is the constant tinkling in my hands that is so annoying, and it seems to get worse as the day goes by. I am not as senitive to cold as I was. Everything I touch seems to feel like sandpaper..except my vellux blanket and flannel pillow case! I am blessed to have my vision restored. My torso gets these constrictions. They had been much better yet seem to have returned. Sometimes my efforts to walk seems labored and my legs weak. I get tired after 6 hrs of being up and out. Some days I am just exhausted. I am getting better at understanding my body and some of the fluctuations in how I feel with this spinal cord injury. My blessings to all who are dealing with a neurological disease. I am forever grateful for my faith and trust in God to see me through this...and you. I would like to email with you. Please get in touch, Marie

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im 18 years old im a girl who lives in philly i was told that i had devics dec 25 2006 i would like 2 kno how u are deaing with it

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I am 25 years of age and was diagnosed with Devic's Disease on May 19, 2006. It has affected my life severely. I am blind in the right eye, and have lesions on my spine. I flew to the Mayo Clinic in Rochester, Minnesota to seek better treatment for the disease. I am on many medications for the treatment and symptoms of the disease. I have a 4 1/2 year old beautiful son and I think that me having this disease affects him because mommy cannot do everything I used to do. I get very depressed at times and feel backed up in a corner because of not having anyone to talk to that knows what I'm living with everyday. Having someone to talk to would be great...

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Okay, here's my story, probably similar to some of your's. I started with symptoms when I was 14 years old. I was in home economics class and my eyes started to hurt and get blurry. I made it through the rest of the day, but as soon as I got home, my mom rushed me to the eye doctor's. I couldn't see out of my right eye at all. I was diagnosed with my first episode of optic neuritis. I was referred to a neurologist with the suspicion of MS looming, but all the scans, tests, and spinal taps were negative. This left us with more questions than answers. Shortly after the eye episode, my legs became very weak and I was unable to walk at all. They were like jello. I could not keep them under me at all. I didn't know what was going on, neither did my parents or the doctors. I live in a small, rural area and our resources were limitted at the time, so I was given oral steroids and watched closely. Over the years I continued to have recurring episodes of optic neuritis, about 3 to 5 a year. Eventually the oral and IV steriods quit having an effect and we are now unable to treat it at all. I have traveled to the Cleveland Clinic to be told that I was crazy, and finally have a wonderful team of doctors at the University of Pittsburgh that work with my local physician. I actually ran across Devic's and NMO on my own while researching causes of recurrant optic neuritis. My entire digestive tract has shut down and I almost died this winter until a feeding tube was placed to provide suplimental feedings. This looks like what we have been searching for all these years, but I do not get my hopes up to high. Other diseases have also fit the mold, but fallen short. I fit most of the criteria and my doctor sent the antibody test, so for now all I can do is pray for the test results. It sounds crazy to pray for positive test results, but at this point I need something we can do that is proactive instead of waiting for the next symptom. At least there is treatment that is effective, we just have to always look at the bright side of things.

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I was diagnosed with Relapsing-Remitting MS several months ago. After the birth of my second son in Dec 2006, I experienced a bout of ON (bilateral) and weakness in my lower right leg. A brain MRI was negative, but my Neuro still thought it was MS and prescribed my Copaxone. I wanted a second opinion, so went to another Neuro (who specialises in MS) and was told that I didn't have MS, but that she suspected I had Devics. A spine MRI, LP, and blood test confirmed Devics. I would love to hear from any other Australians who have Devics.

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I understand a little english, so I would like to know someone to spoke spanish. I have NMO (Devic's) Dx. since june 06. Plese contact me. I am mum of twins and a 3 years boy. I also take Azathropin y prednisone. I have had 4 attack just befre I live prednisone, so I am thinking it will be my ever friend.

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I am a 36 year old woman with Devic's. The disease has caused me to lose significant vision and the treatment of Prednisone has caused Diabetes. I am wanting to alk with others who are dealing with Devic's. I am very interested in persons who have been on or who are currently taking Imuran. I welcome all replies.

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Hi, I was diagnosed with Devic's in the summer of 2006. I was living a pretty normal life, until one night i had a severe headache and that was the beginning of my journey. My local hospital misdiagnosed me with a stroke because I lost my mobility on the right side at 1st. over a period of a couple of days my left side began getting weak. I was then sent to Johns Hopkins in Baltimore Md., w/ a diag of TM. It wasnt until a few weeks later that I complained of the periphial vision and blurriness in my right eye. Finally I lost all eye sight i that eye it hasnt come back yet. But the good news is that I was sent to a spinal chord facility in Atlanta, GA (The Shepperds Ctr.) I began therapy, I went from a power chair to a manual chair to a walker then a cain and now nothing because of prayer, dtermination, intense therapy and a great neurologist. I've had plasma pheresis, cytoxin, rotuxin, Iv steroids, oral steroids, cellcept which i am still on. I have baclofin and neurotin and klonopin for my spasms. They were so severe at one point, I think it was the nerves waking back up. I take a muscle relaxer and Ibuprofin for pain and that sharp, hot feeling that some of us have around the bra line area. I recently tried requip for restless leg syndrome. I dont want to go on and on but please everyone stay positive and visio yourself up and walking and living life, stay stress free. Oh yeah, my doctor also recommended i take fish oil and B12. Although my right eye hasnt come back yet, I still cant complain, I just think "LOOK HOW FAR YOU'VE COME DANA" I have an 8 and 12 year old, I couldnt leave Devic's beat Dana, I had to beat it, I just pray that I stay free from any relapses, I also have lupus so I have to be very careful. Best of luck to you all and I hope that I encouraged someone!

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I've had a demyelinating condition since 1996. It started with vomiting and then numbness in the limbs, and at first it was thought to be Guillam Barre Syndrome. In 2003, after a relapse in which I went blind in both eyes, I was diagnosed with MS, put on IV prednisolone and later tablets which were tapered off, and AZT. Last year my doctor said he suspected I rather had Devic's Disease. We only got an MRI scanner here last year, but when I did the mri, the doctor said I might have both MS and Devic's. I'm able to walk unaided indoors, but use a rolator when I go out. Also my eyesight is improved, but blurrs when it gets hot - and I live in the tropics! I'd like to share notes with people who have had similar experiences. Thanks Gayle for your wonderful site.

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I am a writer working on a novel in which one of the main characters has a progressive disease. I would love to hear from people with Devics disease and/or their carers - how is it for you? All information will remain confidential, but will, I hope give me more insight, Many thanks, Liz

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i have devics disease and transverse milities, has anyone had chemo treatment for devics. i start on 01/23/2007. please write if you have any information. thank you! and god bless you all!

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hey there... i would love to find some guys out there who can relate... there seem to be so few men out there with devic's. it has been hard to find my balance in life as i begin to deal with this illness... would love to hear from anyone; especially guys who can relate to the balancing act i'm in right now with my wife, children, and career... my wife and i thank you all for providing this forum for people all over the world to come together and support each other... THANKS AGAIN AND I HOPE TO HEAR FROM YOU SOON.

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had ON last oct 2006 and TM in Jan. 2007. Just diagnosed with neuromyelitis optica and i felt shuddered. pls tell me more about this, is this disease life threatening? i have 2 young boys.

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I work in a cancer institute that treats NHL patients with Rituxan [rituximab].What has been astonishing has been the number of patients who have autoimmune co-morbidities [immune hemolytic anemia, rheumatoid arthritis, immune thrombocytopenia purpura] that have completely resolved with Rituxan treatment. That makes sense, since the cancerous cell in NHL is the same type of cell that makes antibodies. Since the damage of Devic's seems to be caused by the NMO antibodies [the ones that the Mayo Clinic test screens for], it would make sense that Rituxan would help Devic's patients. There has been a preliminary phase I trial, and 9 of 10 patients with Devic's responded to rituxan therapy. So to the person who was thinking about going on that trial, I would heartily encourage you to enroll if you are eligible. I'm more than casually involved. My wife was diagnosed with MS 5 years ago, but when she had a horrible exacerbation in 2004, they initially missed the active lesion on her MRI, because it was on her spinal column. They screened her for the NMO antibodies, and it was negative, but that test misses 25% of Devics patients. I understand the process of differential diagnosis - there are something like 8 or 10 criteria that let the doc's say Devics vs MS - my wife has all but 3 - and one is very arguable. But since the NMO screen was negative, the docs are still focusing on MS. There is the 1:100,000,000 chance that she has both. But she can't enroll unless/until they decide she has Devic's. What scares me is that this affects her breathing because it paralyzes her diaphragm - which is what is the most dangerous Devic's complication.

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I'm 17 years old looking to talk to anyone with NMO. It's hard not being bale to find someone to relate to, so now I'm doing something about it. I was diagnosed September 2006. My goal is to meet someone in person with NMO. I would also like to try and find teenagers. But talk with people who have been diagnosed for more than 5+ years. :)

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I'm a brazilian girl and... don't speak english very good!!!

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I am 23 years old, married to the most kind and caring man ever. I am currently in limbo although my neurologist strongly believes it is Devics due to the results of a spinal tap (I find out for sure Monday). I've suffered with symptoms for over four months, have done the IV steroid, five days and tapered off with oral. My symptoms have included complete blindness in my left eye (never fully recovered); numbness in both legs, hands, and arms; severe sensitivity to cold (literally feels like being cut with a knife); tingling in the lower back whenever I bend my head forward; certain loss of functions below the waist; and severe spasms, the rest of the symptoms I can live with except for the spasms, they are so painful, I get them mostly in my left arm, it feels like my nerves are burning creating a need to itch, it’s almost maddening the way it feels and it lasts for several hours. If anyone else has had these, is there anyway to make them stop. This last one occurred on Wednesday and scared my husband half to death! I am currently working but due to my symptoms I have missed a lot of work. I’m afraid of leaving my job because I have great insurance and I love what I do. All my life I have suffered with depression, and I sometimes feel like I’m spiraling down, like I don’t have any hope. If anyone is out there who can pass along kind words, and become a pen pal, I wouldn’t mind supporting each other through this. Ciao.

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Hi! my name is Paula and my story started February 5, 2003. I awoke to go to work and noticed terrible pain in my temples whenever I moved my eyes. I chalked this up to a weird kind of headache and went to work. This continued and worsened to the point of nausea when I moved my eyes, two days later went to my PCP who told me to take Advil over the week-end and to call him Mon. if no improvement, which I did. Went to see an Opthamologist who did a test and told me to see a neurologist and have a MRI that week. At this point I did not realize I had a visual problem but, the test he performed a (visual field) showed I had no peripheral vision. I will try to shorten this: Over the next 7-10 days I lost my vision both eyes, MRI was normal LP was normal and I was told optic neuritis and started on IV solu-medrol followed by a taper. Once I reached a low dose of prednisone I again, started having eye pain followed by visual loss. I have now had IV Solu-Medrol ten times and have never been able to get off of Prednisone. I have also taken Decadron IV followed by oral tabs, with no luck. They have tried methotrexate, plaquenil and cytoxan to try and get me off of the prednison with no succss. I had one episode in June of 2003 in which I loss 30lbs in a 3 week period, severe weakness in my legs and falling I was hardly able to walk. This eased over about a month. I have had since the beginning and continue to have numbness, tingling and a general creepy crawly feeling in my legs (worse on the left) and hands. However, last month had something new, which was a tight feeling around my knees that moved up to my bra area. I said it felt like I had on a "hot" tube top and it was hard at times to get a deep breath. I also lost my vision again and had a hot tingly sensation on my skin. At one point they suspected shingles. My neurologist again had me do MRI's and this time for the first time saw white spots at the thoracic area. I had a LP that was negative and the second NMO I have had which was negative. In spite of this he says he feels certain it is Devics or transverse myelitis optica. He is investigating a new treatment which is Rotuximab? anyone familiar with it? He says I have to get off of steroids and I want off of them. Anyway I hope I didn't ramble and that this made sense to someone. I too feel very isolated and at times question my sanity. I would love to correspond with anyone who is or has experienced something similar. Thanks for reading Paula

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Wife was recently diagnosed with Devics after what Doctors thought was MS beginning 5 years ago after birth of our first son. Optic Neurtitis came on after that pregnancy - permanent vision loss in one eye - multiple spinal attacks over last 5 years. Cytoxin for 2 years. Now after Devics diagnosis after birth of our twins 5 months ago - put on Rituxan - I have not seen Rituxan mentioned anywhere here on this board - early trial results seem to show promise for Devics. And after speaking to some top Neuros in the USA, I keep hearing positive stories. Hoping Rituxan - which is a Genetech drug - can induce long term remission. Supposed to work by depleting the B Cells from the body which we are told are the guilty party during the immune attacks on the spine and optic nerve. Worth exploring...

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I HAVE DEVIC ILL 3 YEARS AND THE LAST YEAR I CANT WALK I CANT MOVE MY HAND . I WOULD LIKE TO ASK IF FOUND ANYTHING NEW MEDICINE AND WHO IS THE END OF MY ILL DEVIC THANKS BEST REGARDS THEONI MANOLOPOULOU

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hi. i am a mom of three teenagers. i was diagnosed with ms back in january 2000. at that time i suffered paralysis with a lesion at t-5. 5 years prior, i went blind in my right eye. since then, things wax and wane. sometimes good, sometimes bad. about 2 1/2 years ago, i was told that i didn't have 'MS', i had devic's. my doctor doesn't give me much info about this disease. no info on prognosis either. i am frustrated and feeling quite alone most days. not knowing what will happen to me. if anything. i would love to talk with someone who knows where i am coming from. i am now on disability. exhausted all the time. body aches constant. write if someone can. i would so appreciate having a friend.

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This info is about my cousin just diagnosed with Devic's. She is 40 with 2 small babies. Doctor's at this point guessing. Any help would be appreciated in knowing the proper steps or advice

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My 4 year old has recently been diagnosed and I am looking for other families to share information re. treatment etc. Please get in touch if you will, Thanks I am Suzie Mum to Niamh who we are pretty sure has devics. We are based in the UK. Niamh was five years old a few days ago. Niamh was a pretty normal child until last november 2005. She had had a few health problems since birth with an abnormality called choanal atresia where her airways didn't develop properlyshe required surgery at birth for this and several further operations. This in itself is a rare condition a nd we thought that she had had her share of health problems in dealing with this. November 2005 - after a day of vomiting and being generally unwell Niamh became blind in both eyes , She had all kinds of tests, blood tests, MRI scans, lumbar puncture, eye checks, pressures monitored in the brain, sleep studies. They initially thought it was ADEM. Then the docs diagnosed optic neuritis and gave her steroids iv then oral for a few weeks. Her left eye was badly damaged possible from a previous episode of ON, and they thought that she had been to young for us to notice. She was left with no vision at all in her left eye and a gradual return of vision occurred in the right over several months. She coped really well with this and returned to school with one to one support and started to learn braille. During the investigations for the sight loss an incidental Pineal Gland Brain Tumour was seen on the mri and has also required monitoring and she has been seen by an oncologist. This is tiny and hopefully a red herring as it hasn't grown at al in these months. I have spent several months looking at stuff re. ON and the tumour online and had read some of the devics/ms related stuff. The docs did mention to us that there was an increased change of dymeilating disease occurring in the future and were not able to give us a reason for the optic neuritis occurring. We hoped the ON was a one off episode. May 2006 - Another bout of ON and complete visual loss for Niamh. No new investigations were dome at this time and Niamh was treated with steroids iv and oral again. She is still recovering her vision in her left eye and improving daily but has poor colour vision. Again we hoped that this was a one off event for Niamh. Other symptoms During these months she has had lots of ongoing health issues , with pain in legs and back, oversensitive skin, sleep difficulties, personality changes, several bouts of severe vomiting over several day requiring hospitalisation twice , weight loss poor appetite stomach pains and being generally run down ( any one else get stomach problems ?) In recent weeks she has also had itchy legs progressing to severe skin itching that drove her mad ( anyone got this ?) August 2006 Over a few days Niamh once again developed a series of these symptoms listed above along with headache, sore throat, temperature, severe pain and an eventual loss of movement from waist down and loss of bladder control. We were on holiday at the time and returned to our local hospital for lots more tests and an MRI etc. The docs quite quickly diagnosed NMO or devics there and are pretty certain of this she has all this symptoms in her csf and on scan. They are unsure of a cause so far. This ahs all happened in that last two weeks. She was given high dose steroids for 5 days , and is now on the tapering dose and also Garbpentin an anticonvulsant that has controlled her severe pain and itchy skin excellently. She has regained almost full movement in her legs although one is a little weaker/stiffer than the other and was walking again after about 10 days. We left hospital 2 days ago. So this really brings me up to date with where we are toady, I have lots of questions etc That I will bombard you with soon. Our docs are getting opinions from great ormand street hospital ( the uks biggest childrens hospital ) re further treatment and are planning for this to be azothiapine. I am aware that this disease is really rare in particular in children. I will be grateful of any advice, support and information sharing from you all. Thanks suzie x

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30 years of MS Symptoms Just had a blood test to look for the NMO marker. Wondering how long the results take to get back.

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I have recently been diagnosed with Devic's Syndrome. My doctor had to send away for an antibody test to the Mayo Clinic. My first attack was in January. My legs went numb and I had severe back pain at the T6 level. At that time my spinal cord was so inflammed they thought I had a tumour. I had an operation/ spinal tap and they found it bizaare as there wasn't much of a tumour there. They did notice that I had extensive demyelinating lesions on my spinal cord. My eyesight has never been affected by this however throughout my childhood my eyesight got progressively poorer. I wear glasses but my prescription hasn't changed in the last seven years. I'm not sure if my decline in eyesight as a child was due to Devic's. At anyrate I was treated with a steroid through an IV, then was given decadron and was tapered off of it. I went home walking without a walker. Then two months later I had another attack. I was told that I had transverse myelitis. If you hear this term question it. It means that they can't explain why your spianl cord is explained. I went back to Trillium Hospital in Mississauga and got the neurologist on call. He tested me for everything from HIV to Bird flu. Everything came cleara didn't have anything. I also had MRI's done of my brain, that appeared normal and of my spinal cord. T1 - T10 was inflammed. In total I had 5 Mri's done ( 1 brain, 4 spine) My second attack I had paralysis from the abdomen down, I lost bladder and bowel function. I was treated with IV steroids and then another tapering dose of steroids. I was discharged from the hospital for two days and then I had my third attack I had more severe paralysis and lost bowel and bladder function again. At that time the test came back positive for Devic's Syndrome. I had 5 days of IV steroids, then I had a plasma exchange for 5 days and Iam now taking Azaiothorpine (immuran) and Prednisone orally and as well as other medications(Calcium, Stool Softner Ducolox, Multivtamin, Baclofen -- for spasms) and I have been almost four months without an attack. I am presently at Lyndhurst a spinal rehabilition centre and I have just recently started to walk a little with a walker but use a manual wheelchair to get around. I have spasms but they have declined with the baclofen although they are there and painful but short. I am continuing with physiotherapy and find that I am not as tired as I was before. My endurance for living has improved significantly. i got my bladder and bowel function back, i can distinguish hot and cold in my legs, although the nerve damage is somewhat impaired, it feels fuzzy it's a lot better than not being able to feel anything at all. I got my abdomen muscles back and am able to sit up and move my belly. I still have pain in the middle of my back at the T6 level and I have a band around just underneath the bra line that is painful however that was all numb before. I take percocet for the pain periodically. I hope that with this medication and physiotherapy I can continue to enjoy my life. I really hope that this helps.I'm hoping to use this illness for good in someway. I am a musician, specifically a composer/ singer/keyboardist. Since I've had a lot of time to think, i've been writing a lot of songs(strangely everywhere I go there's a piano--- at the hospital the recreational therapist put one in my room and placed me in front of the nursing station). I am attempting to write an inspirational musical about how we can triumph over adversity and also to bring awareness to this disease. Imagine, there are probably a lot of people misdiagnosed with MS and not getting the proper treatment. Just remember you may have Devic's but Devic's doesn't have you. God Bless.

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Diagnosed in Feb 2003, 4 months after my twins were born I already had girl now 7 and boy now 14. diagnosis gave me courage to leave a violent marriage, and we know live with my parents. I have no sight in one eye and very little in the other and due to nerve damage in both legs below knee I am in a wheelchair. I have recently started having seizures up to 10 times daily so am struggling at the moment. i love making greetings cards to sell for the twins nursery.

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I am 39yrs old married and living in North Carolina(originally Cleveland Ohio). 1999 ON right eye, IV steriods given immediatly and sight back to normal. MRI of Brain showed no lesions/ no mri of spine done. 2002, again ON right eye, IV steroids given immediatly and no lesions. Fastforward Jan 2003 numbness, tingling right leg. Admitted to hospital, MRI of spine 1 lesion, no brain lesions. Administered IV steroids 5 days. Feb 2003 another attack same lesion but crossed over spine. Another round of steriods. Dec 2003 visited a MS Immuniologist specialist at UNC-Chapel Hill, she gave a the probale diagnosis of Devic's. Have been on avonex since March 2003 and I have been living pretty much a normal life. Blood test sent to Mayo clinic this month-have not received results. Today having trouble with right/left leg, very stiff and tingling. Put on IV steroids for today and will start oral dose for 3 days(30 pills a day YUK!). I also have other autoimmune diseases-Myasthenia Gravis, Addisons disease and hypothyroid. Is there anyone else who has Devic's and other autoimmune diseases? Would love to hear from you.

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I am living in India due to hubby's work but I am Scottish and home is now South of England, well when I return from India next yr. I am married and have 3 daughters, 24, 22 and 15. I was diagnosed with RRMS in Dec 99' after an attack of optic neuritis. I had no more symptoms until April 03' when all 4 limbs went weak, I made a full recovery but in Dec 03'/ Jan 04' I had a major relapse that left me wheelchair bound and paralysed from the waist down. After being in India for 1 yr my GP sent for a report from my neuro in the UK and when it finially arrived it said that they suspected that I may have NMO but no one thought to tell me that when I was at home. So now I am as confused as ever not knowing what I have. Would love to e mail others with this old but new disease!

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Hi I am married to Alan, who was struck suddenly last week,with paralysis from waist down, and semi blindnes in one eye.has been diagnosed with Devics now from scans and lumbar puncture.he had and episode of optic neuritis 2 years ago .We are obviously devastated and he is very frightened.However I am so encouraged by the positivity and courage shown by everyone on this site.Wow! my heart goes out to you especially the young people and children and their parents. My question is when should we be asking about azothiaprine and plasma exchanges as he has had no response to steroids.? Love to hear from anyone.

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I am 33 years old, married with 2 daughters who are 21months and 4months. I live in scotland and am a qu lalified probation officer. My hobbies did include running prior to my diagnosis but now unfortunatley I don't run. I enjoy the cinema and eating out. My favourite country is South Africa as my husband is south african and his family are all there. I was diagnosed with devics in January 2006 and am making slow progress. I recently had another MRI scan and am due to start AZT once I have had a thyroid cist removed.

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I was diagnosed with MS in '95, but recently my Dr. has requested I take a blood test that may or may not determine if I have Devic's Syndrome, as my symptoms seem to be closer to Devic's. But I was wondering if anyone that has been diagnosed with Devic's is on Medicare and is Medicare paying for the tests, treatments, etc.? I did not respond well to the ABC drugs for MS, but after 2 yrs. of Novantrone and now Cytoxin, I have had only a few minor attacks on my legs. I would appreciate any info along these lines. Thanks, Pat Finn

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I've received a preliminary diagnosis of Devic's disease. I would really like more information about what to expect and what I can do at this early stage. I'm also wondering if having had a flu shot for the first time last year perhaps gave way to my being vulnerable for this disease.

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Hello, My name is amber and I am 17. I have had signs of this disease since the age of 8. I woke up blind at that age and never regained sight in my left eye. In Dec. of 2000, I was officially diagnosed with Devic's. I have had every procedure, test, and treatment related to this disease. I lost sight in right eye in oct. of 2005. I am in a wheelchair, diapers and basically spend my life in my room. I am really not complaining because I have a great family. I would just like to know if anyone has had a treatment that left them relapse free longer than 7 months. Each relapse gets more severe. I would love to keep in touch with anyone who like me has nothing but time. Thanks for listening to me and I hope to get new pen pals.

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HELLO MY NAME IS CASSY.I FOUND THIS SITE FROM A GOOGLE SEARCH.I HAVE BEEN RESEARCHING MULTIPLE SCLEROSIS AND SIMILIAR DISEASES FOR THE PAST YR.I HAVE BEEN SICK FOR ALMOST 3 YRRS. AND THIS PAST YR. I HAVE BECOME DISABLED.I THOUGHT I HAD MS UNTIL I STARTED RESSEARCHING DEVIC'S.---I HAVE HAD MANY SYMPTOMS BUT HAVE A HANDFUL I STRUGGLE WITH ON A DAILY BASIS.MY PREVIOUS DOC. WAS A IDIOT---BUT I NOW HAVE A DESCENT ONE,WHO IS ACTUALLY FINDING OUT MY DX.I AM WORRIED BECAUSE I AM REALLY SICK,AND I READ SOME POSTS AND YOU ALL SEEM SO UNDERTANDING.I GO FOR A MRI OF MY BRAIN ON SUNDAY---BUT THE SCARY PART FOR ME IS THAT I JUST HAD ONE 8 MONS AGO--AND IM WOONDERING WHAT WOULD SHOW NOW THAT DIDNT THEN?I AM AS SICK NOW--WELL MAYBE A LITLE MMORE HAN BEFORE,I HAVE HAD EYE TROUBLE--MOSLY PAIN,PAIN IN MY AARMS AND LEGS--ALMOST 24-7,NUMBNESS,SEVERE WEAKNESS ,SPASMS,LIST GOES ON,THANKYOU FOR READING THIS

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Just found out today that I have NMO. (Mayo clinic blood test was positive.) Never even heard of this disease until a month ago. I have been treated for what the docs thought was MS since 1987. (Good news is no more injected medicines...) Finally an explanation for why my MRI's don't match my level of disability. I have depended on a wheelchair since 2002; have needed a power chair since 2004. Have had minimal episodes of visual symptoms over the years; none now. Besides the legs not working (along with other below the waist functions), I deal with fatigue, weakness in heat, and spasticity in my legs. Seems like I ought to say something about myself, other than describing my symptoms, but I think I'm somewhat in shock and angry about the years of misdiagnosis.

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Oh my, after 17 years - there really are other people out there like ME! Thank goodness! Recently, I was in Boulder/Denver Colorodo! My husband & I climbed Longs Peak (14,000 ft) together.One of the 54 highest peaks of the Rockies. I love to climb!Ok so I almost made it to the summit but I flew into Denver just two days prior and I had not aclaimated to the altitute change from 700 ft of central Texas. I am of British descentants, I grew up in Upstate New York. I love to run, bike and paddle. In Feb. 2000 I was diagnosed with Devics. After my daughter was born, I was diag w/transverse myelitis and spinal menengitis and then ON and MS. Four years ago Celiac, & a strict Gluten & Diary Free Diet. Now lupus SLE and RA (hands). Neurogenic Bladder & IBS DO NOT stop me from having climbing, travel & fun!

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HAILEY IS A 4 YEAR OLD, WHO WAS FIRST DIAGNOSED WTIH TRANSVERSE MYELITIS, OPTIC NEUROPHOTHY. LAST YEAR IN AUGUST SHE WAS DIAGNOSED WITH MS. TODAY 7-11-06 SHE HAS BEEN DIAGNOSE WITH DEVIC'S.

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I was diagnosed in May 2004, I am female and married with a son who is nearly 6. I was so pleased to find there's a support network for Devic's seeing as it's so rare and that anyone you mention it to has never heard of it!!. I would be interested to hear more from others and would be happy to tell you my story.

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I was diagnosed with NMO one year ago. My first real episode of NMO hit me when I was 16, and went paralyzed. I regained all my strength but continued to have bladder problems. They didn't know what had happened so they left my diagnosis at transverse myelitis. It wasn't until my eyes started getting involved, and another episode of weakness that my doctors decided to try the blood test for NMO. They also sent me to the Mayo clinic, where I was correctly diagnosed. I just recently had another relapse which involved paralysis and loss of sensation from the waist down. I'm still trying to recover, but my hopes are high.

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i have devic's/nmo

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I'm 35 years old, I have a partner called Chris and we have three beautiful children. Chloé 11, Calam 10 and Maisy 8 months! Two dogs Bertha, an 18 year old bearded collie and Toto an unknown quantity - rescued! Three hamsters Dash, Salt and Pepper and no, not a partridge ... a budgie - Snowey! Oh and tropical fish but they're Chris's domain I just always kill them. I live in Newquay in Cornwall, some people mention surfing is popular here!!!! Ah and I have Devic's.

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Hi I need someone who has devics to maybe help me out here. I have been in limbo for 3 years with a MS diagnosis. It started with loss of vision in my left eye that lasted for a month. The doctor put me