CIDP, While I am waiting for the tests, genetic?

Posted by SusanEllen66 @SusanEllen66, Aug 4, 2023

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…

Interested in more discussions like this? Go to the Neuropathy Support Group.

SusanEllen66 | @SusanEllen66 | Aug 8, 2023

@sb4ca just heard from cousin. In his opinion, it would have to be Charcot-Marie-Tooth disease if it was genetic, and he doesn’t think that is what I have.

Crazy thing is that I was diagnosed with Polyarteritis Nodosa in 2015 and I assumed the neuropathy was caused by that. 🤷🏻‍♀️

goldacharna | @goldacharna | Aug 10, 2023

In reply to @SusanEllen66 "@sb4ca @goldacharna I found an article on the Science Direct site that mentions a genetic link..." + (show)

Thank you! Very interesting.

julbpat | @julbpat | Aug 11, 2023

In reply to @SusanEllen66 "@sb4ca just heard from cousin. In his opinion, it would have to be Charcot-Marie-Tooth disease if..." + (show)

I was tested for Charcot-Marie-Tooth. They fully expected me to have it, but I didn’t. My sister and I share many of the same symptoms, but mine are worse. My Dad and Granddad lived active lives with chronic pain. I have SFN, with the classic pain, now all over, and autonomic neuropathy, as it has affected my digestive system, bladder, etc. I was tested locally at a clinic for genomic medicine. They told me to just hang on, because new genomes are being discovered all the time. That I might get a call some day that they have identified mine, and then my sister can get tested as well. I’m not sure that it has to be CMT. I think that’s just the one that has been identified and studied the most.

sb4ca | @sb4ca | Aug 16, 2023

In reply to @SusanEllen66 "@sb4ca thank you. I forwarded that link over to my cousin who is an oncologist. I’m..." + (show)

How did your appointment with the neurologist go?

SusanEllen66 | @SusanEllen66 | Aug 16, 2023

In reply to @sb4ca "How did your appointment with the neurologist go?" + (show)

@sb4ca doctor did EMG below the waist today. Next week arms etc.
no diagnosis yet, but he told me severe to moderate neuropathy, and a pinched nerve in my back.

He’s setting me up for physical therapy, and pain management.

How are you doing?

sb4ca | @sb4ca | Aug 16, 2023

My neurologist has not done a EMG for several years now. Just the nerve conduction studies He said my last one done just a couple months ago wasn’t “too bad” and I lost my trail of thought to say I was freezing during the test. I swear in the past they’ve even used a hair dryer to warm me up. I did ask the technician about it but he just blew the question off. Keep me apprised going forward since you have my curiosity now lol

SusanEllen66 | @SusanEllen66 | Aug 17, 2023

In reply to @sb4ca "My neurologist has not done a EMG for several years now. Just the nerve conduction studies..." + (show)

@sb4ca I think I got it wrong. I believe he did a nerve conduction study not emg. I only felt the zap in three areas of my left leg. Otherwise my muscles just didn’t jump.

You were freezing? Was it because of your nerves? I’m not sure I understand.

SusanEllen66 | @SusanEllen66 | Aug 18, 2023

Chronic Inflammatory Demyelinating Polyneuropathy is suddenly causing me lots of pain. All of a sudden my feet are taking turns, swelling up with lumps on the bottom. It’s hard to walk.
Last night was the worst. Both hands and feet were on fire and my joints hurt.
Now, my legs are throbbing, and my fingers are hot.
I put lidocaine on my feet and hands last night before bed, and was able to sleep.

Neurologist said I have severe to moderate neuropathy in my lower extremities. He is testing upper this coming week.
I’m supposed to start physical therapy, and pain management soon. However, traveling even close by for lots of appointments will put a strain on me for sure. I’m going to check out having them come to me. I read that Medicare will pay for home care for therapy.
Has anyone on Medicare gotten approved for home services?