Thread: PN is not cool!
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Old 04-21-2007, 09:20 PM
dahlek dahlek is offline
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Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default All suggestions posted are on target...

but, I have to ask you, as it's important: Didn't anyone tell you that you COULD experience some 'asorbtion' problems in the future, when you had the bypass?

I think a short history of me would help you understand...I was ultimately diagnosed with a sub-acute neuropathyapproximately 7 weeks after a 9 week bout with pneumonia. I was diagnosed by an ER doc who'd 'found something on the internet'. Complicating it was I had been hypo-throid for many years, but, it was all 'controlled'. After 15 months of non-treatment by one neuro [6months]and changing neuros, further getting a CIDP diagnosis [probability, contingent on 4 months of testing] by the head of an well-known neuro-dept head at another area teaching hospital- Well, I started IVIG. What a difference. I could/can walk again! I can function! A good thing for sure! One thing that neuro head implied, but was not really followed up on was that he'd suspected asorbtion issues. Well, it's true. I've had the CIDP/PN for four years. Last year diagnosed w/BC [the tame kind] and going thru a possible auto-I Hashi's as well. It's to be expected in a way. My attitude? Heck Why not one MORE? It's in very good company! Somehow I think this new doc in my 'stable' will be zeroing in on the asorbtion issues - and here I was blaming the multiple meds I'm on! This is just to let YOU know where I am coming from....I've read, I've learned from folks here and the 'net' which can be a fountain of info...providing you know what to look for and sift thru things to find out what YOU need.

Never, ever ignore your internal 'instincts' about what is going on in YOU! I had achieved all my diagnoses, second opinions and referrals, on that instinct, as I was NOT 'net conversant' at the time [and, in a fast time-frame--some folks here have been thru the 'process' for decades]. That 'little old voice' inside you works the best of any other 'experts' in the world.

Soo, what next? I suggest you read all the stickies listed at the top of this forum and think which aspects apply, or not, to YOU. Only YOU can be your best advocate. It helps to be armed with knowledge to ask, or fight for the tests and treatments you may need. Those stickies will teach you how the 'processes of diagnosis' should happen, and, unfortunately don't. IF you have a doc, a GP or Internal who YOU trust and can ask the right questions that ultimately direct you to the rite tests, docs and treatments, you can , if nothing else, have it[PN] become a non-issue, or at least, keep the mess from getting worse.

There are NO silly questions here, I've asked a heap of them, and, at times, continue to do so. Don't be shy! BTW, my 'history' is kind of tame compared to other folks here...we all have different PN diagnoses, causes, whatever, but we all have been, or, are going around that whole big block!

Super good thoughts till later - j
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