NeuroTalk Support Groups - Anyone with Anti-MAG neuropathy?

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Anyone with Anti-MAG neuropathy? (https://www.neurotalk.org/peripheral-neuropathy/27718-anti-mag-neuropathy.html)

Female anti-mag just under two years.

Quote:

Originally Posted by lmba214 (Post 1111605)

Didn't mean to take so long to answer NancyKay. Been busy with shoulder surgery, PT, pain clinic visits, applying for SSDI, etc. etc. I hope you are doing well as you can. My visit to the rheumy at Vanderbilt last spring was very disappointing. Nice guy and all but he wanted to blame ALL of my symptoms on fibro. Totally disregarded any previous test results. I give up on finding a Rheumatologist for myself, but found one for my son who is treating him for pain due to some kind of connective tissue problem.

I did get referred to another local Neurologist for arm pain. I'll take the anti-MAG and other previous test results, but I expect he'll just blow all that off like everyone else has so far. Guess I'm resigned to living with getting gradually worse. I don't have the energy or fortitude to keep looking for a doctor that knows about anti-MAG and/or is interested in investigating.

I hope you were able to get insurance to cover your treatments and that they have helped you feel better.

Hi! I live in the Chicago area and see a neurologist at Washington University in St. Louis. They treat Anti-mag. I have mostly sensory, no muscle. I have been seen 3 times. Mostly they check my balance and strength. Because I am not being affected yet in these area, I do not take anything. My feet hurt, but not bad enough for treatment. What does help when I can't sleep due to pain is lidocaine patch. I only use once every couple of weeks. Do not like ingested drugs, so no Lyrica for me. I was seen 6 months apart and now will go back in 9 months unless a change in balance or weakness etc. I swim and walk and do a lot of stairs. The doctors at Washington University Neuro-Science center are very knowledgable about Anti-Mag. They will not blow you off. Good luck,

Welcome Mamasucci. :Wave-Hello:

Quote:

Originally Posted by Mamasucci (Post 1152073)

Thanks for your info mamasucci! Their website has some good information on neuromuscular diseases and I've wondered about their clinical care. Nice to hear from someone going there and that you recommend it. I'm in the southeast, so going there would probably be doable.

I haven't tried to find a new neurologist yet, but probably should. The only good one I've ever seen, who ordered the anti-MAG test, is retired. The last one I saw was referred by my ex-Rheumatologist for forearm pain. NCV testing showed carpel tunnel and that was that. Still so many unanswered questions.

Hope to hear how you are doing in the future and that you continue to function without resorting to medication.

Recently diagnosed with Anti-Mag. Three treatments of IVIG and no change. If treatment works, how long does it take? Has anyone been successfully treated?

Hi,

I'm new to this forum. I've was recently diagnosed with Anti-Mag Polyneuropathy. My level of antimag is 48,045. I'll be seeing the hematologist next week to discuss treatment for pain in my hands and feet. I'm assuming they might suggest Rituximab or Imbruvica. Does anyone have a similar experience?

Thank you, I appreciate any input.

Hi Munger

Welcome to NeuroTalk :).

Recent evidence suggests that Rituximab is less effective than was initially thought in treatment of anti-MAG neuropathy Placebo-controlled trial of rituximab in IgM anti-myelin–associated glycoprotein neuropathy .

Imbruvica is usually used in treatment of some B cell cancers. Peripheral neuropathy is a known side-effect of this Imbruvica Side Effects in Detail - Drugs.com .

These things might be worth discussing with your haematologist.

Quote:

Originally Posted by kiwi33 (Post 1256387)

Hi Munger

Welcome to NeuroTalk :).

Recent evidence suggests that Rituximab is less effective than was initially thought in treatment of anti-MAG neuropathy

Imbruvica is usually used in treatment of some B cell cancers. Peripheral neuropathy is a known side-effect of this

These things might be worth discussing with your haematologist.

Thank you so much, my anti-mag level is 48045. Is that considered high?

Probably what was done was to measure your anti-MAG antibody level using an immunoassay (an ELISA). The results are usually expressed in Buhlmann Titre Units (BTU).

BTU <1000 is negative, BTU between 1000-3000 is low positive and high positive is >70000 BTU. So, your results are in the positive range.

Quote:

Originally Posted by kiwi33 (Post 1256679)

I saw the hematologist oncologist yesterday and have decided to proceed with the Rituxan infusions for four weeks.

I'll let you know how it goes, first one is Jan 5th

Quote:

Originally Posted by Munger (Post 1256772)

I saw the hematologist oncologist yesterday and have decided to proceed with the Rituxan infusions for four weeks.

I'll let you know how it goes, first one is Jan 5th

Well, my insurance won't pay for Rituxan so I'm waiting to hear about funding through the manuf. they won't pay for Imbruvica either.