NeuroTalk Support Groups - Anti-MAG neuropathy

NeuroTalk Support Groups (https://www.neurotalk.org/)

- New Member Introductions (https://www.neurotalk.org/new-member-introductions/)

- - Anti-MAG neuropathy (https://www.neurotalk.org/new-member-introductions/27197-anti-mag-neuropathy.html)

Quote:

Originally Posted by lmba214 (Post 875401)

Does anyone know the significance of high titers? My neuro didn't give me a number, just said they were very high. He was surprised that my NCV was normal and did a skin biopsy. No results yet.
Anyone with Sjogren's and Anti-mag pn?

Welcome to NeuroTalk:

We have some threads on this subject:

http://neurotalk.psychcentral.com/sh...light=anti-mag

http://neurotalk.psychcentral.com/sh...light=anti-mag

http://neurotalk.psychcentral.com/sh...light=anti-mag

I did a quick search but had missed some of those posts.

Quote:

Originally Posted by Big John (Post 856622)

Hi Martin

It has been some time since the last post and I was wondering how you are?
My treatment is half way through, iv Rituximab and Cyclophosphamide for two days with five days of Prednisilone tablets. Then three weeks off and it starts again so for me just 11 weeks to go. So far so good, a bit of tingling in the arms and hands on day 7 and pins and needles but it soon eases after another day or so DV. Main problems so far is with the anti sickness and anti nausea tablets which adversely affected my digestion but were optional, I am much better off without them.

Needless to say that I am keeping well away from folk as my immune system is compromised and taking all other recommended precautions because, being retired, I can.

How about you then, your condition was much more rapid onset than mine, I do hope that you got the funding and the Rituximab helped.

Best wishes

John

Hi John,

Sorry for the delay in re-posting.

I was awarded the funding for Rituximab and I received It once a week for 4 weeks and the last one was on the 23/12/2011.
The Rituximab was given on it`s own with no other medication but had no effect at all. So I deteriorated again back to the wheel chair. I went in to hospital in June to have plasma exchange for eight weeks it worked well but my Dr said I will need plasma on regular intervals, probably every six to eight weeks.
At the moment very upset with my Dr as he leaves every thing up in the air and leaves me hanging and he makes me feel that he doesn't care. I was meant to have an appointment on 6/8/2012 but his secretary said he had an important meeting to go to, then a Sister got in touch and said he was on holiday, I have to now wait another month to see him.

Hope you are feeling better.
Many Thanks
Martin

Quote:

Originally Posted by EDELSTEP (Post 743114)

Dear Nancy,
How are you doing?
I was just dx with anti mag neuropathy and the doctors all want to start me on Rituxan. They did not even discuss plasma phersis. Have you seen any improvement?

2014---I had the 4 doses of Rituxin in 2011 and it stopped the progression of the nerve destruction. My weakness was up to mid calf both legs and finger tips. Now Nothing in fingers and just numbness both feet below ankles. I walk and travel and drive. I see my neurologist every 6 months and as of now no further treatment needed. I would definitely have Rituxan again no matter the cost to be able to walk and write.