That site is a useful barometer for diagnosing?

Anonymous
November 21, 2010 at 9:06 pm

BUT use it only as a measure of what key things your own doc[s] use to evaluate you. And test you as well. Use it as a tool not as rules, please. They are guidlines only, not rules of law by any means. BTW? The #’s of CIDP types has expanded from about 6 when I’d been first diagnosed-6+ yrs ago to about 14 now.
My first neuro did ‘just the very basics’ but, given his training, background and biases…he went no further than PN! Not one whit further!
So I set out to get a second opinion…and got some testing…[but not FAST enough for me?] So I got a third, luckily from the neuro. dept. head at an area teaching university [Thank goodness for ‘cancellations!’] After that? Testing went fast and furiously. Then, a Diagnosis which Neuro #2 concurred with, and I was on my way. During all the testing? It all just felt ‘right’!
Back to FRED? That weakness is part of our symptoms? And another part our disuse+disease…either thru simple weakness and/or fear of doing more. Key to PT is to get your doc to include that ‘home program’ should be established. You’d be surprised at how fast you can progress strengthwise with silly, often boring exercises that you can do at home…pacing yourself in bits and pieces to build up and improve without exhausting yourself. AND don’t forget? Once PT ends? You’ll need some of those exercises and tools to MAINTAIN whatever you’ve gained. It’s harder, but it can be done! I truly hope you get PT and a not just good therapist? But a great one! THEY ARE OUT THERE somewhere.
Good hope and extra strength to both of you!