AnonymousSeptember 30, 2009 at 9:45 pm
This is for Norb.
I have been with anti-GD1a high for 2 years, and still going quite well, no cane, no wheelchair.
Now I had one more antibodies testing, because of permanent dizzines.
I have 1/10.000 anti-MAG now, I wonder what should I expect.
Can walk for a while with no problems, but my legs weight like I have a
car acid-leader battery on each one, and some kind of deaf and tinnitus.
Maybe Borb can tell what to forecast about this.
AnonymousOctober 5, 2009 at 7:24 pm
No answer from Norb…
I wish what´s going on with him.
Other strange is that here nobody else has anti-MAG neuropathy.
I wonder if there is other forum to anti-MAG, because seems to be as many
people with as CIDP.
Maybe some neuro from GBS_CIDP can explain this.
AnonymousOctober 5, 2009 at 10:37 pm
please check this thread:
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.
AnonymousOctober 6, 2009 at 4:27 am
i´m 42. All started in 2003 with paralizing lumbar pains.
My symptoms are; fatigue, face paresthesias, dizziness, 4 limb pains and weekness that
comes and go.
But I complain to my neuro about mental confusión, memory problems, he says this
is peripheral, not central involvement.
He started me on aziatioprina for one month, and have another blood test.
I found this survey on anti-MAG about prognosis,
it seems that no matter the treatment, the relapse is the same over the years.
Thanks for answering.
AnonymousOctober 6, 2009 at 8:23 am
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?
AnonymousOctober 6, 2009 at 8:57 pm
Besides anti-MAG, I have high titles of anti-GD1a, with anti-GM1 the Guillain Barré antibody.
I also have anlylosing spondylitis symptoms, like sacroileitis found on a pelvic MRI.
I have a beautiful cocktail on me.
But I think I´m lucky to still walk with no cane, with some balance problems.
Do you have another antiboies checked?
They come on kits, so is the same $ to have them.
January 14, 2018 at 12:36 pm
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.
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AnonymousApril 9, 2007 at 10:18 am
Do any of you have anti-mag? I was diagnosed with it in August and am still in the dark about many of the issues that comes with having a rare disease. I always wonder are the symptoms I am experiencing “normal” or not, etc. I was reading someone else’s post and my symptoms seem very similar to CIDP although a lady in my treatment group has that and my neurologist has never said that I could possibly have it as well. Any help would be appreciated.
AnonymousApril 9, 2007 at 4:51 pm
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.
AnonymousApril 9, 2007 at 5:00 pm
Thanks for answering me. What is rituxan? I have read some of the threads for the past few weeks in the forum, but am not sure what rituxan is. They give me carimune for my IVIG treatments.
Unfortunately, I have horrible medical insurance at the moment so lyrica (which was helpful in the beginning) isn’t being taken. I was also on cymbalta and that is not covered as well, and I just can’t afford all of this stuff on my own.
I have so many questions about symptoms and what is normal, what is not, etc? NO ONE has ever told me if this disease progresses, what type of prognosis is there, what happens during the progression of this disease and my doctor just keeps saying “it’s a rare disease, we don’t know”. I am so tired of hearing that. I’d love to find someone in the area with the disease but according to my doctor and the neuromuscular clinic at Wash U. in St. Louis (I live in a suburb), there is no one else in the area who is diagnosed with this at the moment. Some days I think that’s a good thing, other days I just get mad that I have to be a guinea pig.
AnonymousApril 10, 2007 at 7:02 pm
Thanks. I have been in contact with his office but since my doctor is an old associate of his, they wouldn’t accept me as a patient. They are limited in their patients I was told. I am going to try again in June but I am suspecting that I’ll get the same answer.
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