MS and Devic's....

[757cutie]

so I have been on every type of meds for MS that didn't work at all...then I was told that I had Devic's only been on Imuran and rituxan for the devic's....Today I was told by my neuro that I have both diseases. I have had 5 different neurologist since I've been dx which was 15 years ago and I have new activity on my brain and spine. Now he wants to stop that rituxan and start me on Imuran again...Has anyone else been told that they have both MS and Devic's?

[MSer102]

My doctor thought maybe I had Devic's, but I guess I don't. When I was studying up on Devic's I read that there has never been a proven case of someone having both Devic's and MS. When someone has been diagnosed with Devic's, it means that the MS diagnosis that came first was wrong. Apparently the Devic's diagnosis [U]replaces[/U] the MS diagnosis, so a person can't have both. So it sounds like if a doctor says you have both, the doctor is wrong. Does your neuro know that? I also read that rituxan is the standard treatment for Devic's so it seems strange that your doctor would tell you to stop rituxan and start on a different medicine. I did a lot of studying about Devic's when my doctor checked me for it. Maybe you need to study more about it than what your neuro told you cuz what he said doesn't sound right.

[SNOOPY]

Cutie, did you have the NMO(neuromyelitis-optica/aka-Devics) bloot test (NMO-IgG)? Unlike MS, NMO has a blood test which was developed by the Mayo Clinic. Blood samples are sent to the Mayo clinic.

I am not aware of someone being able to have both MS and NMO (usually the person has been misdiagnosed with MS when it was NMO), but I could be wrong.

http://www.mayoclinic.org/medicalpro...is-optica.html

http://www.mayoclinic.org/medical-ed...0/nov-26b.html

[757cutie]

Yes I had the blood test and the neuro that told me I have Devic's is no longer my neuro she moved away...so I had to start seeing one of the other doctors and I just had 2 MRI's one of my brain and spine and I had new activity on both... I just don't kno what to do....should I look for another neuro?

[SNOOPY]

Cutie,

You may want to visit to the Guthy Jackson Foundation. They have information about NMO that you more than likely will not find on MSWorld. They have an online community and members that can hopefully point you in the right direction.

http://www.guthyjacksonfoundation.org/

[757cutie]

And he says that he is surprised that my arms are not effected from seeing where the damage is on my spine. I am so confused right now.

[MSer102]

Cutie, did the doctor who told you you have Devic's refer you to another neuro who knows about Devic's before she moved away or did one of the other neuros just "take you over"? The things your saying about your diagnosis and your medicines don't sound right compared to what I learned about Devic's when I studied about it.

You might not need another regular neuro but you might need to at least see one who knows about Devic's. My doctor conferred with other neuros before deciding I don't have Devic's. Where are the neuros you've been seeing? You live in Virginia so your not too far away from Johns Hopkins in Baltimore. Hopkins has neurologists who know about Devic's. Maybe you could go there for another opinion?

[757cutie]

yea she pretty much just left and he took over as my neuro...I've been to johns hopskins but I was only 15 then I'm 31 now maybe I need to go back....can I make my own appointment or do I have to go through my neuro because at this point I really don't trust my neuro.

[MSer102]

Cutie, I'm sorry I don't know how to get an appointment with Johns Hopkins. I'm guessing it's easier to get an appointment if your doctor refers you but there must be a way for someone like you who doesn't trust their doctor to get an appointment there without a referral. Maybe you could call them and ask? Or maybe somebody at the Guthy Jackson site poster SNOOPY told you about could help you find out how to get an appointment there? I'm so sorry that you don't know what to do there must be somebody at those places who can help you!

[Grace53a]

Hello Cuite,

One cannot have both Ms and Neuromyelitis Optica (formerly called Devic's Disase). There has never been a single documented case of any one ever having both and they are believed by the research communtiy to be mutually exclusive.

There are currently five different testing methods available to test the blood serum for NMO. The Mayo Clinic currently uses the ELISA and in the event that it is inconclusive (Between 1.6-4.9) it is backed up with the original NMO IgG Indirect Immunofluoresence test. A postiive test result is definitive for the disease but a negative result cannot rule it out as there is roughly a 30% chance of registering a false negative. That being said, a positive test result if not required for diagnosis at this time, but the patient must fulfill the diagnostic criteria for either full NMO, or one of the NMO Spectrum Disorders.

Please visit The Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research. Their patient community, Spectrum, has the most comprehensive library of NMO articles in one place, on the web.

Grace (NMO+ since 2005)

[Mariloudy]

I would appreciate any advise on NMO. I was dx with MS in 1974, started Betaseron in '94 and that medication basically slowed the progression of the disease. I am legally blind after many bouts of ON. Since moving to CA the neuro here wanted me to take the blood work for NMO, something I never heard about when I lived back East. My antibodies were off the charts so I am being referred to a specialist at UCLA. I think the treatment option that is being considered is daily prednisone and Cellcept. I was told to stop the Beatseron because my last MRI (a few weeks ago) showed active lesions in brain & spine.

Has anyone gone through this? What and how did the specialists determine if you had/have MS or NMO.

Believe me it is hard for me to wrap my head around not having MS after 40 years and being treated for another illness that is so similar but doesn't respond to any of the MS drugs?

I could really use some advise if anyone has any to give.

Thank you
Marilou

[MSer102]

Hi Marilou:
Go to the website someone else recommended: [url]http://www.guthyjacksonfoundation.org/[/url]

NMO is like MS in some ways but is really pretty different from MS so you can't ask people with MS about it because they don't know enough about it to tell you the right things. When I was studying up on it when my doctor thought I might have it I found out that the less I tried to find answers about it from people with MS the better. Better to ask the people who actually have it. Good luck.

[SNOOPY]

I could really use some advise if anyone has any to give.

Hello Mariloudy and Welcome to MSWorld

I am sorry you have such a long standing misdiagnosis

Although we have/had members who have NMO they are not always on MSWorld.

I would recommend the advice of Grace53a:

Please visit The Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research. Their patient community, Spectrum, has the most comprehensive library of NMO articles in one place, on the web.

http://www.guthyjacksonfoundation.org/

If you go to the link you will find a wealth of information about MNO. Go to Specturm and log in.

Best wishes