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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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That’s truly unbelievable and likely criminal that the last neurologist never mentioned it. I also have CIPD long motor neuropathy. Same as yours with demyelination and regeneration. My doctor said at one point the regeneration will not keep up with the demyelination and that’s when I’ll be in trouble. I also have a primary immune deficiency and received IVIG for that and had no problems. I remember going through testing for genetic link (none found) but you have your father as a direct link. I have no clue what difference that makes but if you do, I’d be curious to hear
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1 ReactionSorry CIDP
@sb4ca thanks for writing. You mentioned a few things that I am not familiar with. Long motor neuropathy is one. What is that?
Also, regeneration. Nerves don’t regenerate as far as I know so I don’t understand.
This whole situation is just so frustrating. I don’t know which one of my neurologists to “smack” first!
Even my current neurologist. I told them awhile ago that I felt like I was getting worse. All they did was prescribe a low dose blood pressure medication. I think they should have done testing to see why I was feeling worse. No, push the drugs…
Oh, well. I watched my dad go from a vibrant retired man who walked several miles a day to a guy sitting on his walker seat at the park. I guess that’s why I’m so stressed.
Sorry to hear about your problems. My neurologist said and it’s in the literature that CIDP is not a genetic disease.
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1 ReactionHi Susan. You’ve likely have heard of small fiber neuropathy. That has a variety of causes and could be restricted to an area as small as a someone’s feet and is typically a sensory dysfunction (what you feel). Motor nerves are much longer nerves that effect the action of the muscles (to move)and typically lack sensory dysfunction (ie numbness). In CIDP the motor nerves have significant delays on testing. And it is true that nerves have an incredible way of rerouting and healing. Otherwise this disease could paralyze someone fairly quickly which it doesn’t. We’ve all heard stories of someone in a bad accident who initially can’t walk etc and the incredible comeback they show by walking again Same principal. I really can’t imagine having that visual about your dad while you are now facing this too. Please remember everyone is so different and that your Dad’s story isn’t your story Think of the incredible advances in medicine that have been made since his time as well
@goldacharna thanks for writing. Well, it is a rare disease, and doctors don’t know much about it at this point, so I think they should be open to the possibility.
Just flat out saying it can’t be, when they don’t have all the evidence doesn’t make any sense.
My father was about the same age I am when he got sick.
So, for me a genetic disorder feels likely.
@sb4ca thank you. You write very well and I appreciate your empathy.
Actually, my dad was diagnosed around 1998-2000. He went to the hospital for treatments on a regular schedule. I don’t know what exactly because I wasn’t living nearby. But, I know he didn’t take any of the other medications he was prescribed because he couldn’t drink alcohol with them! He was alcoholic and that was more important to him.
My poor mom would get angry…
So, there it is. My memories revealed the truth about why he was crippled so bad. He continued to drive, against doctor’s orders. One day he parked along a side street to go to the senior center. He got out of the car into the path of a moving car and was killed. Two days before his 86th birthday.
Thanks again for steering me through this process. I appreciate you.
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1 Reaction@sb4ca @goldacharna I found an article on the Science Direct site that mentions a genetic link with CIDP.
http://www.sciencedirect.com
Look up Demyelinating Neuropathy. The article is by Noah Levinson, and Christina Edmundson. Decision Making Adult Neurology, 2021
Paragraphs C & D discuss genetic factors.
I tried to copy and paste but was unable to…if you need help finding it please let me know.
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1 ReactionMy God, you poor thing. I'm actually at a loss of words. I'd give you a hug if I could. Given that this seems an obvious genetic disorder, it makes me wonder if perhaps it's a subtype of CIPD. I read several articles in the search you provided and wonder if you saw this. The inherited neuropathies are apparently treated differently than IVIG.
https://www.sciencedirect.com/science/article/abs/pii/S0165572820300072
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1 Reaction@sb4ca thank you. I forwarded that link over to my cousin who is an oncologist. I’m curious to hear what he thinks. He also has professional access to information like that.
Next week is my neurological. I’m feeling so poorly right now, I don’t know what to think anymore.
Blessings!