I understand your predicament?

November 17, 2010 at 10:23 pm

I’d had what’s called a semi-acute onset as it was weeks after I’d gotten the all-clear for a long bout of pneumonia. It took three weeks to go from asleep toes and fingers to nerve pain. Then in the course of about 4 days it went to agony. While in the waiting room of an ER I went to major loss of what seemed to be muscle function and ‘coordination’. It did take me two hands to use either a fork knife or spoon! Bendy straws were super useful at that point in time! I didn’t like feeling like a dishrag all the time at all. But, I was.
Having been rather physically active before this all, I realized right off that I’d needed Physical therapy. [It could take me 15 minutes to get out of a chair..so Help was needed?] I asked my ‘first’ neuro, who didn’t think I needed any at all. I changed neuros and got PT orders right off the bat.
The PT is usually low key, and if you’ve got a GOOD therapist [not a gung ho! one?-some therapists can be too agressive for US and set us back] you can make a lot of progress in regaining lost muscle tone enough to function…even with the hands. Lots of low impact resistance type exercises and even using ‘chip clips’ to improve finger strength. Then more progressive exercises to get back to ‘not normal’ but adequately functioning.
I still experience that ‘trembling’ now and then? But try to ignore it, work around it and get by. It’s all scary at times? But we can amaze ourselves with our ways to ‘compensate’.
BTW? It took me over a year to get diagnosed and on IVIG. I knew I’d go downhill super fast without it? But on it, at least I have some independences! I could not take prenisones due to other medical issues.
Ask questions away, don’t be shy, people here are kind and want to help you get thru as so many have before! Hope and good things!

DO check out this site for the ‘diagnostics’? URLhttp://neuromuscular.wustl.edu/antibody/pnimdem.htmlURL You’ll find lots of different types of ‘neuropathies’ here. Some are subtle, others clear cut. Check out the home page at the top where there are bits about ‘lab tests’. In concert w/the diagnostics? You should be able to tell if a doc IS doing all the testing they should for your situation. If not? Second opinions are cheap. Again, good luck!