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CIDP, While I am waiting for the tests, genetic?
I’ve have neuropathy since 2016. It started as small fiber, and a short time later large, with evidence of demyelinating polyneuropathy. That was back in 2016, and the neurologist I was going to never said a word about his findings. The only reason I discovered this is because I cleaned out my medical records last weekend. It jumped out at me, and I was quite surprised!
Between 2016 an now, I’ve been on several steroid medications for Vasculitis, but I had been noticing that the PN was getting worse very slowly. Currently, I’m not taking a high dose of steroids. All of a sudden the PN is spreading and becoming more painful. My legs are especially bothersome. They feel like I’m walking on jello. I’m very wobbly, and my direction is not always accurate. I sway “off course” many times.
I’ve started using a cane.
My current neurologist is going to be doing neurology testing in 10 days. If I have CIDP, I’m going to ask to be treated with IVIG first and foremost. If I have had this for 7 years already I need to make sure I don’t fall behind.
Additionally, my father was diagnosed with CIDP at about the same age as me…
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Chronic Inflammatory Demyelinating Polyneuropathy-Fingers Are Bending
The fingers of my left hand have begun to move in different directions even when my hand is at rest. I am assuming this is because the muscles in my arm are not getting the correct signals from my brain? My left forearm is achy. It has become difficult for me to pick up something small like a puzzle piece with my hand. Chronic Inflammatory Demyelinating Polyneuropathy has quickly turned my life around. I’m going to see my neurologist today for further evaluation.
Took 12+ years to diagnose my CIDP. After three back surgeries and a neck fusion. No relief. Saw all kinds of docs with no real results. Five months ago I got the diagnosis and began IVIG treatments every three weeks. I now have 4 done. Takes 2 days and they come to my home for five or six hours. The results began immediately. I was able to take more control over my walking and this lasted for a few days. After the second treatment the results were much more dramatic and I actually walked off and left my cane a couple of times! Then I developed a horrible whole body rash, sensitivity to the sun, edema in both legs and I got tired. Couldn't sleep because of the itching. Discussed this with the docs and pharmacist, they added saline solution before and after infusion plus steroids each day prior to infusion. The steroids started reversing my condition immediately although I still have very dry skin and am not sure I'm completely out of the woods. It has been a week since the last infusions and steroids. We shall see. That said, I believe Immunoglobulin is a wonder medication! You know that feeling when you have had a bad tooth for a long while and then it is removed and you suddenly put 2 and 2 together and realize how good you feel. Well, I found myself doing things I hadn't done for a couple of years and it happened before I realized it. Right now I don't even know where my cane is. Oh yes, I still am bent over and moving slowly, but that is a 1000% improvement from where I was just a short time ago when I couldn't hold much in my hands, and could not walk in a straight line or without a cane and could barely get out of a chair. Today, that is my report...have to go work in the garden now!
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3 Reactions@overeazy wow! You have been through so much. I’m glad that you’re feeling better now. Your story gives me hope.
Unfortunately, I watched my dad struggle with this, but it helped me recognize the disease in myself. I’m still working with my neurologist to get a “team” around me for P/T, Pain Management…
Thanks for sharing your experience.
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2 ReactionsHang in there. I am just starting my journey with CIDP so I cannot gibe much advice; I can just encourage you to keep moving and try to be positive as much as possible.
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3 Reactions@coachrandy Thanks, I am trying but it feels like I am falling apart so fast.
How long ago were you diagnosed? Are you getting infusions?
I don’t know what they are going to do with me yet.
I have just been diagnosed as well.. My neuro is confident that IVIG infusions will fix it
5 days in hospital then one day a month. I'm hoping
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1 ReactionI was diagnosed in July. I had an EMG to prepare for an ulnar nerve decompression surgery. My neurologist has set up an appointment in October to give me time to recover from surgery and then we will discuss my options and what is next. Again, I wish you the best.
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1 ReactionHello @SusanEllen66. I wanted to bring your recent post on CIDP back into one of your earlier posts to allow for an update to those members who have been following the previous discussion. For that reason, you will see that I have moved your recent post here now:
- CIDP, While I am waiting for the tests, genetic?:
https://connect.mayoclinic.org/discussion/cidp-while-i-am-waiting-for-the-tests-genetic/
How did your neurologist appointment go?
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1 Reaction@amandajro tomorrow he will be checking my arms. He thinks the problem I’m having with my fingers is carpal tunnel syndrome. If so, I believe it is from using a wide, rather heavy phone!
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1 Reaction@roslyn2314 thanks May I ask why you had to be in the hospital? Was it related to the C I D P?
That sounds interesting. I’m hoping for a plan of action soon…
It’s scary and annoying…