Reply To: I don't know what to do.
I’ve briefly read over what you’ve said and the advice you have been given.
It took me a long time to get an accurate diagnosis. Luckily, my case is not as severe sounding as yours. Hang in there.
Telling you that you have “Radiculopathy” is a cop-out from someone who does not understand how to interpret EMG/NCV for symptoms of CIDP or other peripheral neuropathy. It takes a specialist to test and interpret the nerve conduction times and waveforms and these must be taken from specific locations.
It is vital, imperative (pick another adjective) that you do as Jim-LA and GH have advised. I will ‘throw’ out some advice.
1. Forget what you’ve been told in the past. Only today and your future matter now.
2. Forget what tests you’ve already had. Doesn’t matter. Every Specialist will test you again.
3. Get to a neuromuscular specialist or neurologist specializing in GBS or CIDP.
I agree with Jim, go to Mayo in Rochester. Or, try Northwestern University in Chicago. Be prepared, have all your test results in hand so you can copy and send them to the places you choose to apply. Do it now. All of these specialty centers will likely have waiting lists.
Some neurologists specialize in nothing. Some specialize in other areas and will certainly ‘pretend’ to have knowledge about your condition. Move positively and bravely forward. Remember to smile and laugh everyday. The alternative is unbearable.
I’ll say it again- Do not settle for being told you have radiculopathy. Unless they all tell you that. In my case, ‘all’ meant at least 20 doctors until I finally went to Mayo Clinic Rochester and the old grey haired specialists Doctors agreed to see me and test me.
Take charge of yourself and your case. Be your own general. Go on a mission to seek out doctors who will listen to you, and then, who will help you.