Reply To: A Physician with CIDP – My Story (long)

January 26, 2016 at 1:51 pm

Your symptoms mirror mine, all of them. I’ve was diagnoses with CIDP 4 years ago. I had similar treatment routes and drugs and my CIDP subsided to manageable levels. I’ve had CIDP for probably 20+ years, but it was diagnosed as peripheral neuropathy; because of that muscles withered, faccissulations still bump & grind just below the surface, and axonal damage brought weakness and a foot drop.

However, I found that constantly swimming laps, in my opinion, has kept the CIDP from flinging me into a wheelchair or casting me to a walker. I use a cane.

What frustrates me is that the medical establishment worldwide and experimental medical minds never seems to dig deep into the clinical realms to find a definitive reason for the disease existing in the first place, or the why & how the few therapies/treatments work. Of course they do did as deep as money allows, but so far I’ve not read of breakthroughs (except HSCT) to alter the course of CIDP.

You of all people know that some disease are relentless in the chronic monstrosities that they inflict on us. I curse this disease everyday, as there is no sugar-coating when CIDP elevates into extreme chronic pain, therapies become useless and treatments fail.

I’ve fought CIDP for 20 years and it is slowly getting the upper hand on me. I call it ALS Lite.