when MS is NOT MS

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when MS is NOT MS

Postby amelia » Wed Nov 01, 2006 7:07 am

For those of you that have been keeping up with Gary and his "not MS' dx, it is official. He has NMO or Devic's Disease. After 10 yrs of dx of RRMS and then going into progressive stage, a brain and spine MRI of NO scars, along transverse myelitis, and ON, we walk into the DRs office to hear for the umpteenth time, I don't think you have MS. Since Gary has not had update MRIs and the blood test for NMO only came out in 2004, I don't know if he would have been dx earlier. Much of the treatments are the same, steroids and such. Some call this a more severe form of MS, but heck, we know what his relapses are. Been dealing with them for over 20 yrs. (he went 10 yrs with no dx) Now we are to look at a different form of treatment.
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progress!

Postby jimmylegs » Wed Nov 01, 2006 3:00 pm

hey, an answer at last!! good to have a direction to work in. did you say whether gary was using lutein to any effect?
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Postby amelia » Wed Nov 01, 2006 3:36 pm

He took lutein mainly combined in a multi vitamin. He says it might have helped some, but it don't take much when you are totally blind in one eye and can't see well out of the other. He is getting some light and shadows in the totally blind eye. We have both said that since 1991, the disease has been active. Always eating on something. He can tell it.
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activity

Postby jimmylegs » Wed Nov 01, 2006 4:17 pm

i hear what you're saying about how he can tell when it's active. it feels so creepy to feel your nerves crawling with... something. well i really hope that now you can work on some improvement!
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Postby amelia » Thu Nov 02, 2006 6:46 am

His nurse called yesterday late about treatment options. The Neuro still wants to put him on Tysabri
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drug options

Postby jimmylegs » Thu Nov 02, 2006 2:51 pm

what do you think about that? are you going to ask about rituxan?
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Postby amelia » Thu Nov 02, 2006 4:48 pm

From what I have read, Rituxan would be better since it is a B cell killer. But it is only experimental in Devic's. don't know how Medicare would handle this. The one thing I like about Rituxan is that you only take it when you need it. The give it to you for once a week for 4 weeks. Then they do blood test monthly to monitor the B cell count. when it shows up again, they give you booster dose. You know it is in trials for MS also. I don't know that much about the T cell stuff with MS, just that they look at it as a culprit for the disease. But hey, aren't they still looking at the lesions in the CNS as where all the disability comes from?
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meds

Postby jimmylegs » Thu Nov 02, 2006 8:31 pm

re: cns ya no kidding :roll:

well i hope you get it all sorted to your satisfaction. best wishes!
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Postby Tim » Fri Nov 03, 2006 7:58 am

Hi, I am new to the board and just happened across the post about Rituxan. They are still looking for people to sign up for the trials. I think they have 25 places left. I do believe medicare will pay for the needed tests, at least thats what I heard. I run a Devic's support site and the doctor contacted me about getting patients signed up. She (the Doctor from UCSF) has a post on my site about it. I don't think I can place the link here but if you do a google search on Devic's support you should be able to find it.
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Postby bromley » Fri Nov 03, 2006 8:14 am

Tim,

Welcome. There is no problem posting a link here - especially given that NMO / Devics is a close cousin of MS. I'm sure Amelia would be grateful.

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Postby Tim » Fri Nov 03, 2006 8:31 am

Thanks Ian, I was not sure. I did just find out that there are now only around 10 spots left. If the 10 people from my site that signed up are excepted that is. The link to my group is
http://groups.google.com/group/Devics-support

any information this group can share would be appreciated. I have found quite a few interesting things here that I have passed on.
Tim
Check out my Devic's support group on Google. We have over 120 members world wide and several doctors and researchers that monitor the posts.
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Postby amelia » Sat Nov 04, 2006 11:10 am

:( Unfortunately Tim, all the tests and infusions have to be done in San Francisco. We live in Mississippi which is almost all the way across the USA from the trial site. If you don't know much about Mississippi, there really isn't much going on here. Our Dr is in Memphis, TN, which is 1 1/2 hours away. Oh well.
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Postby Tim » Sat Nov 04, 2006 11:21 am

i just heard from the Dr again and did post more information about the study. I was aware of the trips and even if Keith could qualify for the trial we could not make the trip either. But I did want as many people as possible to email Dr. K just so she would have a more complete list of how many patients there really are and maybe keep us on file for future studies. She is supposed to call me Monday after she talks to Dr. Cree and let me know if they will start compiling a patient data base. Fingers crossed!
Check out my Devic's support group on Google. We have over 120 members world wide and several doctors and researchers that monitor the posts.
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Postby amelia » Sun Nov 05, 2006 1:27 pm

Even though this is called Devic's, do we dare still call it MS? I know many DRs call it a more severe form of MS. Gary says it is like being married to MS's twin sister. LOL
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Postby Tim » Sun Nov 05, 2006 2:50 pm

Two years ago it WAS MS, last year it definitely WAS NOT MS, at the Rare Disease Symposium in Baltimore in July it was referred to as a Cousin of MS. I think they have now found that the NMO-IgG is more accurate at ruling out MS than ruling in NMO. Who really knows? I just wish there was more research. But look at MS, its not really a disease either...right? By definition (at least mine) it is a multitude of symptoms that they don't really understand.
Check out my Devic's support group on Google. We have over 120 members world wide and several doctors and researchers that monitor the posts.
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