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