Hello everyone…
I was diagnosed with CIPD last year. The dr called it A typical because I didn’t follow the “normal” guidelines for cidp. I have not lost my reflexes but the nerve conduction and emg shows Demylentation. A few months ago I started some new symptoms : dizziness, syncope, sweating profusely, ringing in my ears. The dr tested me for Amyolidisis, that came back negative.
I had my blood pressure and lasiks meds changed and that helped some of those symptoms. I guess I was wondering if anyone else with cidp still have reflexes?
I take almost 3000 MG of gabapention a day plus Cymbalta, lyrica, tramadol and a pain patch. I had a stroke 3 Years ago, I wear a c-pap for severe sleep apnea. I have tried to go to Mayo clinic for a 2nd opinion but have been denied twice and put on a waiting list. Anyone having any ideas or suggestion please feel free to give some input.
I'm so sorry. I know how frustrating it is when no seems to be able to tell you what's going on with your body. I have been diagnosed with CIDP but it doesn't seem to be following the `normal ` progression that I've read for others. I asked my Neurologist if it could possibly be something similar but I was told that if I'm looking for zebras I'd have to talk to a specialist.
HI Too Tall, I am writing to you because I have no diagnosis and I am desperate. Maybe we cab help each other. I have severe pain and wonder if anyone can help me. You say you wear a pain patch. 1. What kind of patch--med is that? And where is your pain and how severe is it? My pain is burning sensations on many parts of the body, plus I have pain in my muscle and tissue when standing.
Like you, I have all my reflexes. Like you, I have dizziness, sweating. I had ringing in the ears, but it went away. You say the dr. tested you for amyloidosis? What kind of doctor (neurologist)? How did he test you for this disease (very different from CIDP)? What kind of test? Which of your symptoms made the dr. think you might have amyloidosis?
Daniela
Too Tall, I forgot to ask. Did you have a lumbar puncture? When and what did it show?
Hi Kelsey...It can be frustrating not having a correct diagnosis. As far as I know I do have cidp, Without the loss of reflex.... not sure how common or uncommon it really is. Be sure to visit a neurologist that deals with cipd. That's about all the advice i have. sorry i wasn't much help.
Hi Dana,
I wore a fentenyl pain patch, but i don't anymore, i didn't want to be on narcotics due to the dependency. My pain is in my legs and arms plus I have loss of feeling in my feet and hands as well. The severity of my pain is on a day to day basis, average is a 6 - 7 on the pain scale. If I increase my activity during the day my pain increases. I am getting some testing scheduled for autonomic neuropathy, my bp drops when I stand up, dizziness and light headed. But they changed my bp meds and took me off of the diuretic. That has helped the light headedness some.
Too Tall, could you please answer my other questions? It is so hard for me to get any kind of answers for my condition.
Amylodsis was a genetic blood test. Very Expensive...Amylodosis is very, very rare, my GP says she has only seen 1 case in 25 years. But some of the symptoms I had were dizziness, syncope, sweating profusely. But I read up on Autonomic neuropathy and those symptoms were listed there as well.
.I also did not have a lumbar puncture. I am guessing my EMG and Nerve conduction was enough to diagnosis cidp
Kelsey and Dana,
I get a lot of great information form gbs/cidp foundation website.
HI Too Tall. Yes, my pain is the same. If I increase my activity my pain increases too. The thing is I am barely active at this point. If I just sit around the house, the pain is more manageable. But if I just walk for ten min or do a bit of physical therapy I am in serious pain. My pain is in the muscles, the tissues and the joints, mostly the legs, trunk and fingers. How about yours? And how much activity can you do? I am really trying to understand how others function. My life has totally changed. I am very limited in my mobility.
Yes i received my diagnosis of cidp and testing for amylodsis from my neurologist.
Too Tall, this (yr answer about amyloidosis) is very interesting bcz. I have been thinking about that. I too have dizziness and sweat--but not profusely. Now, I read a lot about amyloidosis and read that testing is done through biopsy of various organs (like, for eg. kidneys), or tissue from rectal area (scary!) or fat on abdomen. But I haven't seen anywhere that there is a blood test for it. Btw, you spell it "amylodosis"--so I wonder if you misspelled it, or we are talking about dif. things.
About lumbar puncture: that's strange. You are the only one here who didn't have the lumbar puncture for this (I didn't but am yet to be diagnosed).
I have a few questions also....do you take any nerve pain meds ..lyrica, cymbalta, gabapentin?
I have mostly pain in legs and arms. Too touch me hurts...I have no pain in my trunk or fingers. I can walk to the barn about 30ft and feed the animals, but upon returning i have to sit and rest. But since i take such a large dose of gabapentin it makes me very tired. I cannot shop without using a cart to hold onto. i walk with a walking stick. I am on IVIG therapy which has helped me quite a bit.
I only take 400 mg Gabapentin, which was prescribed for me off label for insomnia. I am very sensitive to meds and don't want to increase the dose. I was on Cymbalta before for depression--no longer am--but it never helped with pain.
I mis spelled it…amyliodosis. my bad lol
The dr did not order any biopsies, felt the blood work was the best way to diagnose. I take 3600 MG of gabapention as well as lycria and Cymbalta. That is part of the reason I’m tired all the time
I've been told there is no "normal"guideline for CIDP. Each case seems to have it's own set of symptoms and progresses at different rates. I've tried all of the drugs your on with the exception of a pain patch. What is the medicine in the patch?
Has your Dr contacted Mayo? My neurologist referred me to Mayo for diagnostic reasons and once I had the diagnosis, I reverted back to my primary neurologist and primary care physicians.
Good luck in getting a diagnosis.
I am on a waiting list for Mayo, hopefully this spring or summer I will get a call from them. Just want a second opinion. The pain patch was a narcotic-fentanyl but that was before I started taking all the other nerve pain meds…gabapention, lyrica etc…
Quick comment - I was diagnosed first with GBS, then when it seemed to come back, CIDP (by one of several neurologists I've seen - not all agree). Since my symptoms first started in May 2014, I've seen a total of 5 neurologists, all of them considered very good, and two of them are with big city teaching hospitals. Not one has recommended a spinal tap. My GBS symptoms were spot on, and my EMG(s) showed demyelination consistent with GBS/CIDP. The doctors told me Spinal tap is one of several diagnostic tools used to determine GBS/CIDP. Good luck to all as we struggle together to find relief from these elusive and inconsistent symptoms. AND I HOPE/PRAY/ENVISION A CURE for everyone.