1. < Neuropathy

COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

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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swilkins1974 | @swilkins1974 | Jul 30 12:28pm
In reply to @dhamil "Thank you! I’m glad it worked for him. I’m going to try it. 🤞" + (show)
@dhamil

Thank you! I’m glad it worked for him. I’m going to try it. 🤞

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🍀

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omega101 | @omega101 | Jul 30 2:19pm
In reply to @glennathill "I tried Gabapentin but it made me drunk like a sailor LOL so I can't take..." + (show)
@glennathill

I tried Gabapentin but it made me drunk like a sailor LOL so I can't take that. Then they offered me another drug which is an antidepressant but I think it's just putting a Band-Aid on it I want to find the Cause. Plus this antidepressant has a very slow withdrawal to get off of it. That bothered me.

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Hi I agree on Gabapentin! Nortriptlyine which was prescribed to me - low dose 20 mg. has helped me so much!!! Getting off a low dose is not that difficult. The cause you may never know. I tried for two years every specialists in Philadelphia. The result is I have nerve damage and it is going to remain in my life. Everyone and every case is different. Make sure you go to a neurologist.
Best of luck

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omega101 | @omega101 | Jul 30 2:23pm
In reply to @glennathill "Here they don't even acknowledge long covid I use that term they never use it or..." + (show)
@glennathill

Here they don't even acknowledge long covid I use that term they never use it or acknowledge it. They actual played the game my regular doctor sent me to neurologist they test me for neuropathy which was negative then send me back to the regular doctor then he the regular doctor sent me back to the neurologist I did that four times I'm done. They said you probably have small nerve neuropathy but we could test for it but it won't tell us where it's coming from. So here we are.

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Are you close to a University Hospital? If so, it might be worth the trip to see a neurologist there.

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1 reply
glennathill | @glennathill | Jul 30 3:22pm
In reply to @omega101 "Are you close to a University Hospital? If so, it might be worth the trip to..." + (show)
@omega101

Are you close to a University Hospital? If so, it might be worth the trip to see a neurologist there.

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No I'm not

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jrn57 | @jrn57 | Jul 31 9:40am
In reply to @swilkins1974 "My husband was the same with minor numbness in his mouth after 1st vaccine. After 2nd..." + (show)
@swilkins1974

My husband was the same with minor numbness in his mouth after 1st vaccine. After 2nd vaccine his nose, mouth tongue were numb and tongue on fire when eating. No one would say it was vaccine but it had to be. Problem lasted about 3 years. A naturopath suggested magnesium. Believe it or not, it worked. Maybe a coincidence but it’s gone. He continues to take the magnesium.

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I am also interested in what type of magnesium he took pls, and what dosage? I’m 160 lbs - estimated weight of your husband would also be helpful to determine my dosage. thankyou!

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bgator | @bgator | Jul 31 11:56am
In reply to @artemis1886 "Is yours cardiac autonomic neuropathy? It is different since it affects the autonomic nervous system. It’s..." + (show)
@artemis1886

Is yours cardiac autonomic neuropathy? It is different since it affects the autonomic nervous system. It’s not getting better it’s getting worse. We repeated the one month holter monitor test along with the tilt table test. I have seen a cardiologist and electrophysiologist. I was sent to Stanford Hospital to confirm it. I am four years out.

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I have had a cardiologist ask me to do a cheek swab for this type of neuropathy because I have had open heart surgery and my neuropathy got worst after the surgery but have not paid for the test results or do not know if I will. So many causes for this horrible disease. Being sprayed with Agent Orange in Vietnam probably didn’t help!

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1 reply
bettyg81pain | @bettyg81pain | Jul 31 3:21pm
In reply to @artemis1886 "Have you ever had the EMG/nerve conduction test by a neurologist to be diagnosed with neuropathy..." + (show)
@artemis1886

Have you ever had the EMG/nerve conduction test by a neurologist to be diagnosed with neuropathy or have the skin biopsies for small fiber neuropathy? These test are done by a neuromuscular neurologist to confirm diagnosis.

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Yes and it was now confirmed-now what?? The Dr said they think it is auto immune? What does that mean and how is it treated-haven't heard anything else from them???

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1 reply
hello2 | @hello2 | Aug 1 10:28am
In reply to @glennathill "I use cbd salve and it works great but doesn't last long" + (show)
@glennathill

I use cbd salve and it works great but doesn't last long

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The oil can be used 2 or times a day. I use morning and night ususally.

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larry4343 | @larry4343 | Aug 1 12:55pm
In reply to @bettyg81pain "Yes and it was now confirmed-now what?? The Dr said they think it is auto immune?..." + (show)
@bettyg81pain

Yes and it was now confirmed-now what?? The Dr said they think it is auto immune? What does that mean and how is it treated-haven't heard anything else from them???

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Anne Oaklander at Mass General did some work with a bunch of other folks on Covid, autoimmune disease and small fiber neuropathy. IIRC, they only tested people with confirmed SFN. The study showed good results treating with IVIG and / or steroids. I forget the details, but it shouldn’t be too difficult to google. Good luck.

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artemis1886 | @artemis1886 | Aug 1 2:40pm
In reply to @bgator "I have had a cardiologist ask me to do a cheek swab for this type of..." + (show)
@bgator

I have had a cardiologist ask me to do a cheek swab for this type of neuropathy because I have had open heart surgery and my neuropathy got worst after the surgery but have not paid for the test results or do not know if I will. So many causes for this horrible disease. Being sprayed with Agent Orange in Vietnam probably didn’t help!

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The autonomic neuropathy is not done by a genetic check swab.
It can tell you if it’s genetic but that’s it. Had it done.
Biopsies for small fiber neuropathy. I have had two one month holter monitor test showing I go between bradycardia/tachycardia my blood pressure is crazy it was 150/100 for two weeks they put me on BP medication then it bottom out 90/50 passed out and now it’s normal. They performed a tilt table test and sweat test on me for a diagnosis of cardiac autonomic neuropathy. The neuropathy moves into the autonomic system affecting gastroparesis, bladder, kidney, heart and brain where there are nerves. My balance is off the motor part of the neuropathy causes tremors.

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