← Return to Anyone been diagnosed with CIDP? It's very rare

Discussion

Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)

Comment receiving replies
@sdswoboda53

I have it. I began having balance issues and falling ‘out of the blue ‘ in the fall of 2017. A few months later, it was getting worse. I was scared it was something related to my terrible Fibromyalgia which I’ve had for over 20 years. My PCP ran tests and decided to send me to a neurologist in early 2018. He ran EMG testing and stuck my left leg with needles. He mumbled something about CIDP as he left the examination room. My Doctor’s office couldn’t make sense of his notes or through a phone call to him. So 6 vials of blood were drawn, and I was sent to Dr Melanie Taylor in Grand Rapids MI. She redid the EMG tests herself and went to analyze the results. She told me my blood tests showed an autoimmune marker. Her analysis of the tests she performed plus the blood tests made her 99.8% sure I had CIDP. She somewhat explained it (or I couldn’t process it). It is very rare, 3-8 out of 100,000 people have it. How was it explained to you as far as what it does to the body??

Jump to this post


Replies to "I have it. I began having balance issues and falling ‘out of the blue ‘ in..."

Hi, @sdswoboda53 - welcome to Mayo Clinic Connect. I'd be scared, too, if I began having balance issues out of the blue and falling. I am glad you do have a diagnosis at this point with the chronic inflammatory demyelinating polyneuropathy (CIDP) your doctor indicated.

I'd like to ask members @sherlock @mayor47 @jazzy27 @vander626 @jgk85 @jutty and others to return and share about what your doctors may have explained to you about what CIDP does to the body, and also provide an update on how you are doing currently. I'd also invite @johnbishop and @hopeful33250 to participate in this discussion.

While waiting for them to join in, here are some resources on CIDP you may find helpful:

- CIDP information from the National Organization for Rare Disorders https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/

- A Mayo Clinic Proceedings paper on CIDP explaining its history, diagnosis and management for medical professionals https://www.mayoclinicproceedings.org/article/S0025-6196(18)30236-2/fulltext

@sdswoboda53 - what did your doctor prescribe as far as treatment for your CIDP?