COVID vaccines and neuropathy
I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?
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It all depends who you get. I have had great PA and MDs and vice versa.
Yes, you are correct. This is the way medicine is going now. Some of the practices have had the same PA for years and they are great, but many, like the cardiologists in my town, have rotating PAs that are not familiar with the speciality at all. It's the luck of the draw around here. And even the PAs have month long waiting lists. They also utilize alot of nurse practitioners in my area and in New Mexico and Colorado they are independent practitioners who do not report back or collaborate with anyone.
If you haven't joined yet, I recommend joining the Neuro V Long-Haulers Facebook group. There is a lot of educational information about neurological injuries due to the Covid vaccines and it is continually updated by patients. Many of the patients have small-fiber neuropathy, which can be difficult to diagnose. I have Pfizer vaccine-associated nerve damage that could be documented easily by EMG.
Two of my friends said they have noticed my head has movement when I am with them, I wondered if this could be related to the covid vaccine? My hands also feel a little shaky every now and then.
After second shot. Of maderna, my neuropathy started.
Would your local Dr be able to make a referral to Mayo for you to see a neurologist? I don’t know if it will work but I saw a local internal medicine Dr last Thurs who took my symptoms serious and has given me a written order/referral to see a neurologist if I can find one and he said he would do the Mayo referral as well. I’m going to follow up with his office tomorrow and will let you know if it works. My symptoms are now impacting not only hands with numbness and tingling but also legs with unsteady walking and my hands are clumsy too makes it difficult to type for my work. I also feel coldness in my hands and forearms. Then last week I started feeling numbness/coldness/burning in my trunk area lower back and across abdomen so it’s still progressing. My Dr last week thinks since it’s been 6 weeks since start of symptoms it’s likely not GBS however he mentioned there were other conditions that progress more slowly that I need evaluated for. One that I found researching online is CIDP
chronic inflammatory demyelinating polyradiculoneuropathy.
Yes, please keep me updated . My doctor also said that she would give me a referral to whoever I wanted. The issue was still the 6 month wait.
I am so sorry to hear about your illness. Six months to wait for a neurologist is crazy, Denver is a large city and it should not take the long. I am a provider myself and sometimes if I refer someone to another specialty I call myself and talk with the provider and most times they try to work the patient in. Can you ask your primary care provider to call the neurologist and discuss your situation with them and perhaps they can get you in sooner than 6 months. Have you had an EMG? Perhaps with the paresthesia you might suggest that. I sure hope you can find help. Please keep us informed.
Kim
I did have an EMG which was normal. And I am scheduled for a brain MRI this week. I finally managed to get a video appointment with a Denver neurologist in 2 months at the university hospital, so hopefully that will open the door for me for more definitive testing. There is virtually nothing here in the small town I live in. I am 69 years old, with a disabled husband, and no other family so it's a journey for me to drive 7 hours, one way to Denver, but I am willing to do it. I asked my PCP about a referral and she said she would be happy to make one, if I found the neurologist I wanted to go to, but he's the one with the 6 month wait and I was told even his own established patients have a several month wait for an appointment. So, we'll see. Thank you very much for your suggestions.
My neuropathy gets worse when I have COVID vaccine. I also get muscle weakness. Has anyone else had this problem?