in the area....for PN and he's rated as a 'top doc' by many. It took me one year and one month to get fully diagnosed and treatment for an auto-immune related 'polyneuropathy'.
It took me another 6months from onset with my 'un-preferred' neuro to change and then I sought a 'third opinion' from a top ranking teaching hospital...where I was lucky enuf to get an appt with the head of the neuro dept! Tests galore? But all done locally so I didn't have to drive into the city and walk miles after parking on my own...I'd get soo tired soo easily that I was always afraid about getting home in one piece.
When I first got myself computer savvy several years ago? It was places like this that helped me immensely. Knowing that others suffer too? That they are brave and often braver than I am keeps me going!
I now describe what it 'feels' like as would a burn victim..only there are no outward signs...that and MS. When those nerves die? You can FEEL them almost screaming! I am now getting IVIG every four weeks and just had a medi-port installed today w/outpatient surgery-which should eliminate folks trying to get the IV cathers into my veins- sticking for 3-4 tries each time...and I've a skilled IV nurse too. I've just have lousy veins now.
To qualify for IVIG? You have to go thru about 12 tests...and if 6-of them are definite? Then you can get the IVIG. I pray you have not just good, but GREAT insurance tho? This stuff is RICH an in $$$$ !! I do have to say tho, after my very first infusion [part of a 'loading dose', it's called] I was able to walk around almost normally for the first time in over a year! More importantly for me tho, was that my numbness and pain has been spreading to my torso. It's stopped and at times it's almost gone-tho never completely. What Pain I have now? Is what I call my new 'normal' which is much hier than most folks. I do know and appreciate that it sure could be worse! That I've got a treatment that works helps a lot as well. I rarely take pain-killers now, mainly because they tend to mask some of my other med issues and I've got to keep alert on all fronts! Hardest of all is to keep pressing for some sort of diagnosis and get the best treatments FOR YOU that are available. I hope this helps! - j