Hi Pablo,
please check this thread:

[url]http://www.gbs-cidp.org/forums/showthread.php?t=204[/url]

There are several of us with anti-MAG neuropathy. Allaug in Norway, Andrew in Canada and myself in US. We’ve been discussing aspects of this CIDP variant and treatment on that thread. Perhaps you should post there.

As far as an exact prognosis is concerned I cannot answer your question and I hesitate to speculate. Everyone is somewhat different. Generally, progression is slow and symptoms are primarily sensory. My lab results are more than 10 times of yours, 140,000 which is probably the reason my condition is considerably more sincere than yours.

I invite you to tell your story, how old you are, when and how symptoms started and how they progressed over time.

Sorry it took so long to respond. We sold our house in July and are on a 3-months road trip through the US visiting family before settling in the Seattle area. Tonight we are staying at a hotel in Missoula, Montana.

Hi Pablo
The symptoms you describe sound a bit different from those experienced by Norb, Allaug and I. In our case, as mentioned by Norb, there was a slow progressive numbness in the peripheral nerves. For me it started in the soles of the feet, then moved into the toes and then gradually started up the legs. My ability to walk properly was affected, and I had a stocking and glove sensation. Blankets in bed felt really heavy on my feet.
Then it started in my hands too, gradually moving from the finger tips into the hands in general.
I did not experience any pain (although perhaps some people do have nerve pain). Nor was there any dizziness. Only a loss of the sense of balance due to damage to the nerves in the bottom of the feet.
I am wondering whether you should seek further medical diagnosis for other illnesses. When you mention anti-MAG, it may be from another disease other than the one we three share – IgM MGUS or “PDN”.
I hope that you are able to get a firm diagnosis. Have you had an MRI?
Andrew

Hi Andrew,

I just read your post from 2009 and hope you have found a treatment to stabilize or improve your anti-MAG. Not sure if you are still posting on this forum but I’m interested in an update for your condition after 9 years since your description of your anti-MAG symptoms and its progression in the feet, legs and hands is exactly like mine. I just started IVIG every three weeks for six months but doctor will try Rituximab if IVIG not effective.

Thanks,
Peter

Hi Kelly and welcome. Norb has anti-mag I believe and has done quite a bit of research on it and should be along to help you out. Several others have that type also and should be along to respond. Take care.

Jerimy

Dear Kelly!

I have what’s called antiMAG IgM PDN, which has a lot of symptoms in common with CIDP. There is a discussion about this type of neuropathy going on at the moment under the headline “CIDP with antiMAG best left untreated?” You will find a lot of information there, even though some of it is quite difficult to understand. If you search this forum for “Rituxan” you’ll find some more information that you might find relevant. If you have any questions that you can’t find the answer to on these threads, feel free to ask, and we who have been unfortunate enough to have gone through a lot already, will at least have the pleasure to perhaps being able to help someone else on the background of our experiences.

Kel you should look up Dr. Pestronk at the university there, he is one of the world leaders in this treatment (rituxan and anti-mag)