Hi I'm sorry if I sound ignorant but I'm new to this forum. My story: approximately 9 1/2 years ago I noticed twitching in my wrist, doctor diagnosed old age (I was 47 then gave me some tablets & said take for the rest of your life. After 2 weeks no change gave up, many many tests, ex rays, MRI's, 2 Nerve conduction tests Neurologist tells me had Motor Neurone Disease - to get my affairs in order as they didn't know how much longer I had. Now this is now 6 years later and getting fed up with all these tests & no diagnosis. Got 2nd option told the same, 3 options ditto. After doing my own research I figured they were all wrong as I should be dead! So start again, more Nerve Conduction tests including twice where they stick needles in you had 5 now and totally fed up. Now get told I have a twisted ulnar nerve, in for operation - no change in fact I was left with pain in wrist now when I try and lift anything heavy or even sweep get pain in elbow. So off to another Neurologist now in the big league under Steven Davis - President World Stroke Organisation based in Geneva but lives in Australia. See Tim Day who tells me that he thinks....... I may have MMN. I now have basically no muscles in my right hand, getting twitching in both legs, pins & needles in both feet and occasional cramp in right hand.
So now I have been in 3 times for IVIG treatment with Privigen 3 consecutive days the first time, wow noticed a difference in 2 days, twitching in legs stopped, only little pins & needles in legs, hand 90% stopped twitching. In for 2 dose for 2 consecutive days, same but noticed the twitching in hand coming back 1 week prior to next IVIG, now had 3rd IVIG only one day this time and notice twitching back within a week now have pins & needles back in feet and slight twitching. I don't know what to do, it's so expensive here for these treatments and it took me ages to get approved for them, condition being if no improvement I get taken off. They do strength tests each time too and now have me booked into a hand clinic as my wrist has dropped because of lack of muscle tone. I'm so upset with no help I thought I'd join here and read up on other people's reactions and experiences.
I live I Australia and apparently only 250 people with MMN here, I'm 57 and 51kgs, smoke about 10 cigs a day have a couple of alcoholic drinks on the weekend, not very fit (just walk my Great Dane) when doing more exercise found I loose too much weight and I eat like a horse.