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Living with Polyneuropathy CIDP, GBS, & CMT

Not sure if CIDP

I was dx’d with CIDP in 2010. Abnormal spinal, EMG, and blood work also showed Mgus. Yes I’m blessed :grin:. Two bone marrow biopsies both normal, the last spinal was almost normal and my neuropathy feels somewhat better.
The Mgus is now advancing upwards towards cancer levels, about halfway there (I’m 55) and a second protein is climbing as well and about to climb into the abnormal range. (Making me doubly blessed). I have to get blood work done every 6 months with the oncologist. I have no idea where I fit in any more.

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Hello bteeter. These chronic conditions all ‘seem to have a mind of their own’. I note that you’re not sure where you fit anymore. Personally I’d stick with CIDP until the specialists can come up with something else. :grin:

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The only thing I’m sure of at this moment is the M protein is over halfway to up to 575 Waldondstroms, and the A protein is will be abnormal at its current rate of growth. I have the Oncologist, but this town can’t keep a Neurologist any more.

Any chance of you getting to Tulsa? or Oklahoma? There are neurologists available in both cities. You may even be able to forward your medical file to a neurologist for a clinical review. You would need to make contact with the neurologists office and possibly need a referral from your treating PCP, but I do know that some can and will do a review. Just a suggestion.

Merl from the Moderator Support Team

I’ve been thinking about finding Neuro in Tulsa. Only 50 miles and I currently go weekly for allergy shots.

Now it’s going to be Neurologist overload, and who to choose? There are over 50 listed in Tulsa. One affiliated with the main hospital? Or one with the major university OU Wayman Tisdale Center? Insurance is accepted at all of the options, but at the OU center it appears everyone and everything is all on one campus.