You May Be Heading Up The Wrong Tree…

May 3, 2010 at 3:43 am

Hi Elmo,
If you have CIDP, especially after a few years, a simple skin biopsy can confirm, “small fibre atrophy”, with your neuropathy, (CIDP).
This will most likely mean your CIDP will hit your autonomic system.
I can attest to the above, as that is what happened to me.
Slowly, every few months, the CIDP would hit another organ or system of the autonomic system, thus bringing on another specialist to deal with that, (and doing tests to prove it was the CIDP attacking it), and more pills to take.
It hit the nerves controlling my heart, (giving me tachycardia), my bladder, (giving me a neurogenic bladder with a permanent catheter now), my digestive/swallowing system, (of which the nerves controlling the stomach do not work, and I must take pills to make the stomach “dump”, as well as difficulty swallowing and choking–my doctor said if it gets worse then it is time for a feeding tube), and the worse it hit was my phrenic nerve, which controls the diaphragm, which leaves me with very shallow breathing, and both my pulmonologist and GP have both said that is what will do me in–I will be too weak to fight off a flu or pneumonia, and that is what will do me in.
Four of my doctors told me I am dieing. I have advanced CIDP.
I have gone through the various treatments of the protocol for treatment of CIDP, and failed. The best that helped–it did not put me into remission, but slowed the progression of CIDP, was Cytoxan. But I was on it for 1 1/2 years, and being on it that long, it was then doing damage to my body from the drug itself, (I now have osteoporosis which the Cytoxan contributed towards, and mildly damaged kidneys). I am on the absolute last med there is for CIDP, which is Rituxan–and I have little hope it is doing anything.
Though, having seen a top neuro in the country at UCSD, he told me after 6months, if the Rituxan didn’t do anything, I would go for stem cell transplant evaluation. Though, he said I have to be “healthy enough” to get the s.c.t.,
that is a catch-22…I need it to possibly save my life, but yet the CIDP has given me a terminal prognosis.
Go and ask for a skin biopsy–the neuro does it in the office–very simple two jabs with a thick needle in the thigh, and it’s done. Then you get the test results. There are many of us here on this site, where the CIDP has hit the autonomic system. Just ask.
All the best,