CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I have been bounced around from doctor to doctor and have had many tests for over 7 years (a lot of time and money spent to try to get answers for my declining health and quality of life).
One doctor even made me feel (and put it in my medical record) it was all in my head so I “fired” her. No doctor ever suggested a spinal tap. Autoimmune diagnoses seem to still be so far behind and many people are suffering.

The only diagnoses in the last 7 years to my constellation of full body symptoms have been (in order): congenital spinal stenosis, degenerative disc disease, spondylitis, hearing loss (left ear), idiopathic small fiber neuropathy, iron deficiency, dizzy while walking and fell breaking my right foot, cervical spondylitic myelopathy (c5c6), thyroid nodule/micro cancer/Hashimoto’s thyroiditis/hypothyroid, and recently biliary dyskinesia (gallbladder not functioning). My hope is a new neurologist will look more closely at the potential for MS or CIDP to help stop or slow down my fast decline and provide treatments to help improve my ability to function some. My quality of life is gone, I am a 54 year old single parent of a 14 year old son and I have no extended family/support. Scary!

I do feel I need something to stimulate my central nervous system since everything seems to be slowing down communications in my body. How did you get diagnosed and prescribed methylphenidate? What type of doctor helped you? My primary doctor doesn’t seem to consider all of my symptoms or refer me to specialists when things fall outside her area of expertise.

I have CIDP and experience chills (and sweats) frequently. I think it’s due to autonomic (involuntary) nervous system dysfunction. There are many temperature regulation mechanisms controlled by involuntary nervous system, from blood shunting to GI tract after meals to goose bumps, sweating and CIDP affects those. Chills and sweats accompanied by fever is a whole different thing and can indicate serious infection.
As for alcohol intake, I think quality of life is important and enjoying an occasional drink is unlikely to make anything worse. We can’t give up everything we enjoy in my opinion!

I think it would be interesting for those that already have a CIDP diagnosis to say what they experienced that led to the diagnosis. I seemed to have stumbled into it with specific events of muscle weakness and not what I saw as a chronic ongoing issue at the time. And is has now taken time for me to understand ongoing weakness. I've never associated the myriad of on-going symptoms seen in life with it either. But that is just my experience in a world of many different experiences with the disorder. I know the disease is variable and there are also subsets of the disorder.

@harley22 @dlydailyhope You both are talking about temperature problems. Maybe you could virtually get together and try to figure things out.
Be sure to put write your names exactly as they show above. This insures that your message go straight to the other’s email as well as showing up here.
Do you think it would be worthwhile to compare notes?

I was initially treated in the hospital last summer with 5 days of IVIG. It didn't work & my symptoms got worse. I switched to plasmapheresis until my Mayo neurologist recommended I try IVIG again. I was intrigued with the mention of being able to give myself "shots" at home in the future, which I thought would give me more independence. I have been receiving Privigen IVIG for the last 14 weeks in addition to steroids. The combination of those two plus the required Benadryl before each infusion has made me feel sick, weak & fatigued. I don't feel there has been any improvement, but will do the QST & EMG at Mayo in the next couple days, followed by an appointment with the Mayo neurologist to discuss treatment going forward.

@kgitti tell me about the PT and has it helped you in strength and mobility? I too am doing some PT but I find the movements so belittled that feels like it's not doing anything at all. I need some encouragement in this area for sure.

Becky, Wondering why are all the CIPD discussions are under this 5 year old post?

@sb4ca you ask a good question about the age of some discussions. One reason is because once a discussion is stated, it goes on and on so there aren’t discussions with the same title.
There are several other discussions on CIDP. Here is an example:
https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/
The original request for help is old but the discussion is current. You can find more by going to Support Groups and clicking on Autoimmune . You can find most recent discussions to older ones on lots of different topics. It does get confusing, doesn’t it?

Physical therapy is important with CIDP. I’ve had it every two weeks since I was diagnosed in 2021. Working on strength maintenance and balance. I have found it very useful.