I have axonal sensory motor polyneuropathy plus MGUS. Is this the same as anti-MAG? It sounds very similar. I also have the balance issues, heat-related weakness and trembling, plus cramps in my calves at night. I'll be seeing my neurologist tomorrow because the balance issued had worsened (but is better now), plus when walking I have what feels like bruises on the bottom of my heels, and weakness in my ankles (probably since I don't have any reflexes in them). So, is this the same thing or similar? It sure sounds similar.

--or what is called "co-morbid"; approximately fifty percent of those with anti-MAG neuropathy also show evidence of monoclonal antibodies of undetermined significance (MGUS). Monoclonals can result in neuropathy all on their own, as well.

Good day all,
Well I've been on pred for about six weeks now plus on cytoxin for approx. three weeks. Started a course of ivig (4 days) two weeks ago. I really wasn't expecting much but I did notice a slight improvement in my balance and also feel less fatigued. This continues till today. I was actually able to mow the back yard in one shot before resting. At least that's something hoping its just not in my head. I suppose I may be getting an energy boost from the prednisone what do you think? Got some test results back from Athena yesterday after having to call them. Tests sent to my hematologist so I was called by his secretary.

Test results:
Western blot positive
SGPG ELISA 6400
MAG ELISA 6400

I haven't talked to my hemo yet so I have no idea what this all means. Can anyone shed any light on this?

cheers Roy

Awful quiet out in here, just going to generate more recruits to this forum. Is there really that few of us around?

This is the only place I have found with people with anti-mag, so I'm thankful for it. I hope more people find it and add to it, too!

I posted to this thread over a year ago when I got a 'high titer" anti-mag lab result. Skin biopsy and NCV were normal. Previous ANA was very high, previuos SSA was pos. My Quality of life continues to decline, but mostly due to pain and fatigue. Still walk ok with bouts of dizziness, still trying to work 30 hours weeks but its getting harder. I do have some symptoms listed here, cramping in feet and legs and of course, some kind of neuropathy in feet and legs although it waxes and wanes.

I haven't seen much mention of pain and overwhelming fatigue associated with Anti-MaG neuropathy, CNS or sympathetic nervous symptoms.

Also wonder if any of your symptoms ever improve and then flare up again?


So.....
I'm wondering if anyone else also experiences dysautonomia, insomnia with parasomnias, headaches, shooting pains in arms, hands, legs, head? Blood or metabolic probs.?

I have also developed weakness and pain in my hips and this weird thing happens with my hands every so often, not daily. They seems to momentarily kind of just lock up when I'm using them. May be a kind cramping. Hard to describe.

I haven't returned to the neurologist that ordered the mag test partly because the office is horribly mismanaged. Takes 3-4 hours for appts. He said he would refer me to Vanderbilt. Just not sure if i should go to the trouble. Afraid they wont do anything for me anyway since I still pass most of the basic neuro exams. Anyone been there?

I would reAlly appreciate advice. I get anxious about this sometimes but don't know if I should act now and see if i can get treated or wait to see if I get worse. I've seen 2 other neurologists for herniated discs, a hematologist (high iron), my PCP and none even knew what ant-MAG was.

Getting an epidural for pain from spinal arthritis and the discs soon. Maybe after that I'll sacrifice my day off to get another MAG test done :-). Do most get it redone and if so how often?

Thanks!! Hope to hear how others are doing.

I, similar to your situation, lost 20 pounds, then weight stabilized. Fatigue and weakness are now hallmarks of my condition. I absolutely feel that my progression is very fast. I am in the process of selling my business presently because of deteriorating balance issues. Would like to hear from anyone else who's experienced a comparatively rapid decline and their thoughts on that. Still have not met anyone with anti-mag, also leaving me wondering just how few of us there are- never seen a statistic addressing this.

Hi Roy,
There are more of us out there than are responding to our posts. I know that my neurologist at Virginia Mason Med Cntr in Seattle has other patients with anti-MAG. When I lived in Iowa, there were other folks there being seen at U.of Iowa Medical Center in Iowa City. I also believe that there are some who have not been able to get the right diagnosis by their neurologists who are unaware of this autoimmune condition. Hope that more neurologists become aware and more treatments are discovered!
Blessings,
NANCYKAY

Hello:

If it's useful to know what "slowly progressive" means in regard to anti-MAG, maybe I can share with you. I was diagnosed in 2002 as having anti-MAG with all the same symptoms as described by others on this site. So after 12 years....I am walking like a drunken pirate and virtually disabled....very poor balance and considerable pain. My fingers are now becoming numb and my small motor functions causing lots of problems. I have explored all my options with no success.....so will just have to slide down the sewer and take the cards that were dealt to me. So far as I'm aware.....there is no fix for this disease. However, misery likes company and it's nice to know that I am not alone.
Ryan of British Columbia, Canada

I would encourage you to follow-up with a neurologist at Vanderbilt or another large research hospital as most neurologists have no experience or knowledge about anti-MAG neuropathy. Hope all goes well. You may have something other than anti-Mag neuropathy or a combination of conditions.

Thanks Nancy! I do have a combination of autoimmune and musculoskeletal disorders or diseases. Good call! :-) I want to get a fresh look at everything, including the anti-MAG, so I can get the correct treatment. But it's not easy finding the right doctor(s) to do it.

I was a little amazed that you suggested Vanderbilt. My neurologist who found the anti-MAG antibodies referred me to Mayo Rheumatology in Rochester. I expected a referral to neurology, but he knows I need a good Rheumy consult as well. Anyway, it's been a month and I haven't heard anything yet. I'm on medical leave from work and I was actually just searching for a Rheumatologist in Nashville, since it's only 2 hours away.

Please let me know if you have heard of a particular Neurologist or Rheumatologist at Vanderbilt that its good with overlapping conditions like immune deficiencies and/or autoimmune diseases.

Side note: A Rheumatologist in Birmingham said I probably have lupus, one here said Sjogren's but probably not Lupus, and another said I don't have either! Ha! Help.