I too, initially had a sensory CIDP diagnosis?

November 9, 2009 at 7:59 pm

As before that, a Sensory PN diagnosis. Now after six years a recent relapse has affected the whole neuropathy issue and It’s truly a case of a POLYNEUROPATHY! It’ll just get at you more on some things at different times! In terms of diagnositics a person can fit into many of the diagnoses descriptions, tho some more comfortably than others. You have to work with your neuro to pin-point the very BEST BOX to fit into…so to speak.
More important tho? IS HOW YOU RESPOND TO VARIOUS TREATMENTS! And, that you try those treatments and see if you get ‘along well with them’.
Each and every one of us has a different tale to tell, as to how we ‘got it’ and how we were diagnosed, and then/still are treated.
It might be small comfort? My neuro of 5+ years seems to write down a [I]different[/I] diagnosis each time I’m seen! I sometimes wonder IF he’s testing me? OR changing his mind on that particular day! It sure keeps me guessing!
Neurology isn’t an exact science, it’s part training, instinct, trial and error, and I always hope….a dollop of curiousity!
As for diagnosis? I ‘used’ to get some good web sites that outlined all the testing required for say: IVIG or plasmapheresis…things the Insurance Co’s need by way of testing before OK’ing any treatments.. They are getting super hard to find these days! I don’t know why these policies are being kept ‘secret’, so it’s appearing, but that’s how it is. Should I find any good ones? I’ll let you know!
You would likely want to know a cause? That, may never be found. But treating what IS is far more important for now and the future! And even more important is that you find a treatment that WORKS for you!
Keep at it, it will happen as it should. But, never give up on trying to get some semblance of normal back into your life!
Once you know more about where you are medically? And then learn about what to expect? You have knowledge that is empowering. And all that knowledge, in the long run can help save your life and enable you to be better than you are now!
Hope always!