New, CIDP diagnosed, anticipating IVIG soon
AnonymousApril 25, 2011 at 4:01 pm
Hello everyone, just checking in. I just joined the GBS/CIDP site.
After 12 years of visiting many specialist ranging from neurologist, neurosurgeons, oncologist, spine specialist, endochronologist, GP’s, and theUniv of Virginia Medical School, I finally received a diagnosis of CIDP two weeks ago from a great doctor at the neuro/endo research department at Eastern Virginia Medical School(EVMS).
Presently I’m waiting on insurance company review for “medical neccessity” of IVIG. I personally suspected a couple of years ago that I would end up going thru IVIG, so I’m mentally prepared for it.
Often I refer to my symptoms as “burning body syndrome”, or as “being dipped into a pot of boiling water” up to the waist.
Luckily I’m still very mobile and active in my hobby and yard work, however, I have noticed a fast progression in affected body areas in the past 12 months. As with others, you would not know that anything is wrong just by looking at me. (except I do get very anci when the burning is bad)
Historically, I was a mountain hiker, scuba diver, (and way back I was a fast 1/4 mile and one-mile track runner in high school) before symtpoms made these experiences very unpleasant.
I’ll post notes on my IVIG experiences/reactions if anyone is interested.
AnonymousApril 26, 2011 at 9:35 am
Well, sickpuppy, you’ve described a relatively horrible 12 years. You talk about having a burning body syndrome yet still ‘…very mobile and active…’
Pray tell, how was the CIDP diagnosis made? Is it only, or primarily, sensory?
Fast progression in affected body parts means what, exactly? More burning? Do you have drop foot? You cannot do/undo zippers or buttons? Tell more, learn more.
If I understood your condition, it would make reading about your response to IVIG more meaningful. Thanks.
31 reads no replies as of this writing.
AnonymousApril 26, 2011 at 2:57 pm
Sickpuppy – Welcome to this site. I’m sorry it took so long for you to get a diagnosis. I hope you have great success with the IVIG. Remember to make sure you are well hydrated before, during & after your infusion. Also don’t forget to ask about pre-meds.
It sounds like you have mainly sensory symptoms. Is that correct?
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