Wednesday, August 12, 2009

CIDP ... Rocky's blog

Just gave in and ordered a medic-alert bracelet. Figured no one would immediately know what CIDP meant, so I spelled it all out ... which took most all the available space for info. Which is okay, other than being allergic to bee ( that entire family of nasties ) stings, there's nothing of great import. Actually, I'm probably going to feel relieved -- reassured wearing it ... maybe?
Posted by at

6 comments:

  1. UnknownAugust 13, 2009 at 9:38 AM

    I have CIDP as well. Would medical personnel treat someone with CIDP any differently than without CIDP?

    ReplyDelete
  2. RockyAugust 13, 2009 at 11:05 AM

    Once they realize this is disease and not hypochondria, I would expect the same level of treatment as given to any other patient. Hopefully you are finding it so.

    ReplyDelete
  3. UnknownAugust 13, 2009 at 11:58 AM

    Yes, that is what I have found. It seems I know more about the disease than most of my physicians do. However they all seem interested since it is such a rare condition.

    ReplyDelete
  4. RockyAugust 13, 2009 at 12:04 PM

    Have you gotten a definitive diagnosis from a neurologist? All the tests, etc.? Even so, I'm finding things via the internet that I've not learned from the neurologist, though I'm sure they are aware.

    ReplyDelete
  5. UnknownAugust 13, 2009 at 12:20 PM

    Yes, It took a long time and I had to visit many different doctors and neurologist before I got my answer. Actually I found the diagnoses online. After suffering with numb feet and aching legs (I could not get comfortable), I found an article about CIDP and some of the treatments available. I took it to my doctor and asked if I could try Prednisone. He agreed and within a couple of weeks I got good relief. I took this information to a new neurologist who said he had recently attended some meetings concerning CIDP and was interested in finding out if that is what I had. After EMG, nerve biopsy, etc. he tried me on IVIG. It works very well. The problem I have now is that my insurance out of pocket is so high I can't afford anymore IVIG treatments until I get a different insurance plan. I'm hoping we get some insurance reform moving in Washington!!

    ReplyDelete
  6. RockyAugust 13, 2009 at 2:38 PM

    Insurance reform? Yes, indeed! I'm hoping so as well. IVIg runs about $1800.00 per treatment. I'm not surprised insurance plans don't want to pay for it ... but neither do Medicare and the supplemental prescription plans. I, personally, would avoid the prednisone. But that's my personal opinion.

    ReplyDelete

Subscribe to: Post Comments (Atom)