OK, let me get this all straight?

Anonymous
June 12, 2007 at 9:49 pm

You have been referred to a true specialist for a second opinion…but betwen all this, you have experienced additional foot-drop and muscle weakness….

Your head is killing you…had you recently an IVIG session? How many days past? Do you know the rates…If having it at home, home nurses try to well, ‘speed things up’ and go at rates faster than they should be….or your last IVIG is wearing off..About your MRI’s all I can say is DUH! IF you’ve CIDP you should not, would not have lesions on/in the head, neck or spine…these are eliminating factors is diagnosis…One can have good to really good ‘motor functions’ for a year plus after any onset…The nerve conduction values are your most important clue…that and the spinal and blood works that seek any auto-immune aspects.

As for anger, confusion, frustration, and impatiences? Well, I believe, if you have really, REALLY, read all posts here that are available, we are all of those as well… Ali is right..accept what IS then deal with that…then, slowly and steadily go to the next aspect/issue…then the one after that…It all may not END, but it does become, well, a habit?

It-the diagnosis, that is -could all be a possible ‘re-think’ in terms of the dreadful ‘disability – diagnosis’ and all the LTD ramifications that might mean…If I were you, I would get and contract a ‘disability attorney’ right now. If only to avoid some sudden termination and cut-off of future treatments…Believe me, I know folks on disability who have nightmares dealing with this ‘Stuff’! Get your records, get a lawyer, pay him/her to do all the work and deal with the hassles…It is worth it…best to be pre-emptive rather than down-and-out responsive when you are down to get all the best treatments you need and deserve….With the least hassle and stress. The stress is the key here.