CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Sorry to hear you went through a ruptured blood vessel in abdominal area, seems scary. How did that happen? I am experiencing a very hard and blown belly, don't know if it's a result of the IVIG, Prednisone or else?

CIDP- can anyone say what are the main symptoms of CIDP?

Honestly I don't know why it occurred and have been admitted again because of other complications with gastrointestinal issues since the ruptured vessel. Makes you wonder how far reaching CDIP can be, or if it's related at all to these latest occurences. Trying not to overthink things.

I have experience with Demylenating autoimmune, is called MS. MS they say gets worse with heat, that just equates to it attacks the sweat glands... which could be called so many things, but hey call it MS. Theres so many variety of drugs approved for MS. So many symptoms: dizzy, mental, dysphagia, gut, neuropathy, all under the MS umbrella....
FyI, not a doctor, but maybe you could easily get a second diagnosis for MS with very little work... as MS is demylenation...

I have drug allergies. I can do copaxone and modified fodmap type diet. Copaxone has been extensively studied for myelin related stuff...
I also have to avoid meat (known enzyme missing for digestion which also relates to my drug allergies) so I have to take supplemental proteins to make up for it.
Wishing you better luck, sounds very rough , and not very fun

@jshdma I found this information from the National Institutes of Health that mention symptoms of CIDP.
https://www.ninds.nih.gov/health-information/disorders/chronic-inflammatory-demyelinating-polyneuropathy-cidp
Did any of these symptoms lead you to the doctor for a diagnosis?

@becsbuddy - Thank you for this reference. Actually 2 separate neurologists told me very definitely I do NOT have CIDP. But after numerous tests, they cannot tell me the cause of my symptoms. These are: very gradually increasing sense of electrical current starting at the bottom of legs and over years rising to the rest of my body. My legs getting weaker. I can still walk a few miles, but every step feels like I could fall, especially going downhill. The only diagnosis I have is OLP, an auto-immune inflammation in my mouth. Any ideas from anyone would be much appreciated. A pharma. company suggested that symptoms fit CIDP.

Hi @jshdma, I don't have CIDP but I also have to be careful walking downhill with my neuropathy. I found an interesting reference that might provide some clues for you.

"Motor CIDP mimics include multifocal motor neuropathy and motor neuron disorder, while sensory CIDP can be confused with a host of neuropathic and non-neuropathic conditions that have a disturbance of skin sensation. Mar 26, 2020"
--- The Misdiagnosis of CIDP: A Review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7229131/

Here's another one that might have some clues:
--- Neuromuscular Notes: Taking the Mis- out of CIDP Diagnosis: https://practicalneurology.com/articles/2020-feb/neuromuscular-notes-taking-the-mis-out-of-cidp-diagnosis

@tabuschlen Thanks for your info. You sound like you have a lot of difficult problems, MS being one of them. I don't think I have MS, even though there may be some symptoms in common.

MS just means demylenation autoimmune,
There can be sclerosis in the nerves due to autoimmune attack of myelin.
MS doesn't have to mean wheelchair bound, but it does sometimes mean a path to studied treatment since research is funded better for MS than the lesser known autoimmune.

I was diagnosed in 2021 with CIDP and ILD after working in hospitals during the pandemic as a certified healthcare chaplain. I get IVIg once a month and pulse steroids. I am devoted to maintaining as much mobility and health as possible. My journey is blessed. I am recovering. My experiences with illness and care for others leads me to offer support to patients struggling to meet their needs. Please write if you have CIDP or another related chronic AI disease and would like to share.