Any news from Mayo?

[QUOTE=lmba214;1013592]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.[/QUOTE]

Did you find a rheumatologist? Any new findings or treatments? I have had to quit work due to balance and hand tremor problems. Fatigue and muscle weakness come and go. May get another round of rituxan and a new chemo (can't remember name) if insurance will alow. Hope you are doing better!

Hello everyone. I am a 60 year old female. I retired the first week of September, 2013. I then proceeded to get a shingles vaccination. 4 weeks later my feet started tingling and felt weird. My GP said it sounded like sciatic, even though I told him no leg pain. He suggested I see a podiatrist as I was having pain on the top of my right foot. An X-Ray was his contribution and no other suggestions when X-Ray showed no physical problem. I ignored the numbness in my feet over the holidays, etc. Went on vacation in March this year and found it was very painful to swim. I immediately made another appointment with my GP who after exam finally referred me to a neurologist for NCS/EMC, abnormal.
Referred to another neurologist who ordered multiple labs, etc. Also was sent to a hematologist due to high protein. Full skeletal X-ray to rule out multiple myeloma. Then a spinal tap which was supportive of CIDP. Started reading up on that, then my neurologist order another blood test which showed really high MAG igM. Received a call yesterday saying antiMag cause of my PN. Mysymptoms right now are mostly my very tingling, numb, and electric shocking feet. My left hand has numbness starting in the two smaller fingers. As of now no muscle weakness. I am meeting with her Tuesday to discuss treatment. Any opinions as to whether a very high antibody count warrants immediate treatment? I am in the Chicago area and will be getting a second opinion at Rush. Thanks, and it is nice to find this forum.

Welcome Mamasucci.

Hi NancyKay and Everyone on this thread,
My names Mel, I am a 54yr British woman living in The Netherlands and I was diagnosed with Anti-MAG in April 2014. I found this thread when I was first told they suspected I had Anti-MAG and I read all the posts. There is so little information and almost no help/support that I am also very happy to have found this thread.

I started getting a vibrating sensation in my left leg nearly two years ago and before that I'd had other symptoms that I had no idea were related, like very bad itchy legs and cramps in my left foot. I went to the doctor who sent me to hospital for nerve and vein tests in January 2013 but they found nothing and sent me away.

In August 2014 I had Bi Lateral Pulmonary Embolisms and was in hospital for a week. When they were looking for a cause they found MGUS IgM in my blood and then later the Anti-MAG. There is very little they can do and the only drugs/treatments are not proven to be very effective and have bad side effects.

My symptoms have become worse and I have vibrating sensations in both legs now and my hands have sensations, tremors and weakness.

I'm very scared although I do my best not to think about it too much and try to stay positive. I'm not working and I spend most of my time teaching myself to paint which was something I was doing before I was diagnosed. I also am trying out techniques to make it easier for me to be able to continue to paint as my condition gets worse.

Anyway, that's me saying hello and filling you in with a simplified version of my story. Anyone else have hobbies? Anyone know of any new studies into Anti-MAG PN?
Cheers Mel

Welcome Mel2014.

Someone will be along to help.

I can't find an EDIT button so just wanted to correct a mistake.

I had my Pulmonary Embolisms in August 2013 not 2014!! That would have been a great trick as it's still June 2014
Cheers Mel

Hi Mel,
Glad to hear from another young woman with anti-MAG (although I wish you and I didn't have this condition in common!). As you have probably read from my previous entries, I was in my mid 40's when I was diagnosed and am still walking and fairly functional, although I had to quit my nursing job in December due to hand tremor and balance problems (ataxia). Treatments I have tried include IVIg infusions with some benefit and Rituxan without any benefits. I'm currently taking gabapentin at night along with pramepexole for restless legs syndrome (severe), a sleeping pill and valium as I also have insomnia. I've had bilateral carpal tunnel surgery (more common in anti-MAG). Not sure what treatments are available to you in the Netherlands. Plasmapheresis and chemo medications are also sometimes effective but have more potential risks. I hope that you can find a good treatment for you, and we are all praying for more research as there are not any very successful treatments for this problem. Mostly just symptom control. Let us know how you progress.
Blessings,
NancyKay

Hi NancyKay,
Thanks for your reply. At the moment I'm not having or taking any treatment for the Anti-MAG PN because the bad side effects far outweight any benefits. I'm feeling very confused right now because the EMG test didn't show any results but my vibrating/tingling sypmtoms are very strong and 24/7. On the one hand I should feel relief but the Specialist told my GP that I have tested positive for MGUS IgM and Anti-MAG antibodies but the cause of my vibrating/tingling symptoms are unclear. This confuses and worries me rather than makes me feel better.

Have you or anyone else had a similar experience with the doctors and test results?
I also read somewhere that EMG test results can be unreliable for PN.
I see my Specialist next week so I will ask him to explain.
Take care
Mel

Hi NancyKay,
How are you doing? I've agreed to try Lyrica starting Sept. 8th but I'm not really happy about it and to be honest I am quite scared. However I feel I have to try the medication or I'll never know if it will help or not and I might be worrying for no reason.

I asked my doctor again about my diagnosis and what he had said in his letter to the doctor was that the Prognosis of my symptoms is unclear (not the cause of my symptoms). It is easy to make a mistake when reading information in a foreign language however good I am at it.

Anyway I just thought I'd check in,
Take care
Mel