Anyone out there with CIDP?
 

Hi there - too long of a story to go into, suffice it to say three years of loads of symptoms - not all classic CIDP. I have a lot of cranial nerve pain, autonomic involvement and oligoclonal bands in my spinal fluid which indicate central nervous system involvement. In fact my CNS involvement really outshadows the peripheral pain to a large degree- daily migraines, facial pains all over, low stress intolerance, brain fatigue, etc .

My dr. still thinks there is an underlying cause and I start a PICC line for Lyme tomorrow. Im skeptical. I also show signs in my lungs of old sarcoidosis but its not active now - at least not in the lungs. I did my first round of IVIG and felt no real improvement. I have another one coming up in three weeks.

Just wanted to reach out to any of you who feel that your CIDP is either secondary or who have a lot of CNS, facial or autonomic involvement like me.

Thanks! L

Hi there,

My diagnosis is still unclear. I do often come back to CIDP but it doesn't seem to follow the pattern. Have you looked on the cidp and polyneuropathy website? Very slow traffic on that site but might help answer some questions.
I have autonomic problems, so heart palpitations, dizziness,o ut of breath and faint alot. I also have facial problems which are really prominent right now. It's deep within my sinuses and teeth and sometimes feels like its in my actual brain. I have eye issues at the moment and some blurred vision at times which I do worry about on to of everything else. These facial symptoms are sfn like pain, fizzing, pricking, horribleness. I also sometimes get red burning lips with dry crusting when my face os flaring. Sounds lovely doesn't it :-)

Thanks for replying! Im glad Im not alone. I feel so awful with all these head symptoms and it seems like you have them too. It really makes me doubt the diagnosis. Since I posted (two weeks ago?) I had a few really good days. I exercised, didn't research and just put it in God's hands. As my pharmacist pointed out, that was actually 22 days after the IVIG and that seems to be the point at which IVIG is the most effective so who knows! Maybe it is working on some minimal level. I start another round in 10 days so crossing fingers. I also added some autonomic meds (midocrine and florinef) to my regime and topimax for the headaches. Hope you are feeling well....

L

My diagnosis is "atypical" CIDP. I don't really fit the mold of the typical symptoms, but did have an elevated VGKC in my labwork which pointed doctor in the direction of it being immune related----hence CIDP diagnosis. I needed a diagnosis for insurance purposes for IVIG.

When you say elevated what do you mean? Positive by lab standards or just elevated? I was tested by Athena and was at 120 The range was 0 to 450, but from what I understand "normal" people rarely go above the single digits. I also show positive on the paraneoplastic panel initially, then neg on western blot so my dr as well says mine is immune mediated although we can't pinpoint a specific antibody...

I have had cidp since 1999

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I have Idiopathic axonal polyneuropathy of large fibers,,neurologists doesn t want to search i live in my country,shame,,how to fight with disease ?

CIDP and Wow!
 

Hi,
I just signed into the site tonight. I was trying to find the introduction thread and then I saw CIDP and then I scrolled down and saw “Anyone out there with CIDP” and it made me stop. My story is kinda long and no different than anyone else with Neuro issues but, I was diagnosed with Chronic Lyme Disease by CDC standards about oh, 4 years ago.

First though, I was a nurse working nights in the ER and got home around 8am and ready for bed!. I’d been having leg cramps, total legs which as a massage therapist prior to nurse, I didn’t think all muscles could cramp at one time. We were always taught to use the antagonist muscle to break the cramp in the one that was cramping.
See, it’s already getting long. Anyway, I cramped so bad that I tried to stand but, fell and broke a lamp while still screaming in pain. I grabbed a rug and covered the glass so my cats wouldn’t get cut.. I woke up the next morning, soaked in blood from a large piece of glass in my foot, which I didn’t feel.
Ok with just that info alone, it was a mess trying to figure out what was happening. I never knew I couldn’t feel my feet and parts of my legs. I just thought I was happy getting my sneakers off after running around the ER for 13 hours. Then after getting my foot stitched over the next 24 hours I noticed my hands were numb and tingling. Spent a couple weeks in the hospital, that was the last time I worked. Just like that.

It was after that, that they tested me for Lyme as I use to train horsed in NY state. I had all the bands to confirm via CDC that I was Lyme positive. That was 35+ years after training the horses and ticks were a daily event back then. I do remember being hospitalized with FUO (Fever of Unknown Origin) and just very sick. That was the beginning of this very long crazy illness. I’m 62 years old, living in an Assisted Living Facility, Permanently disabled, totally confused as to what happened. Many other issues, heart attack, stroke, cancer, yet I wake up everyday still. Sorry to introduce myself on your thread but your post caught my eye so fast, I had to respond.

I’ll be looking through the Site and as a newby, I didn’t even notice when you posted this or what? All I know is I couldn’t pass it by. I hope you are doing as well as can be, I certainly don’t mind if you want to discuss any of these issues and more. Thanks for jumping off the page, not that I wish you ill, but I thank you for posting.

Mark