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]