1. < Neuropathy

Sudden onset of neuropathy

Posted by honghtt @honghtt, 2 days ago

Hello everyone,

48 yo, F. About 14 days ago, I suddenly had tingling and numbness on my two feet. Then it quickly moved up to my hands. At night, my feet are burning, and muscles twitching. The numbness and tingling are constant. I couldn't sleep at night! My PCP said that I'm having neuropathy, prescribed me with Amitriptyline and referred me to a specialist. First meeting will be next Tuesday.

I'm totally shocked since this came all of a sudden. I'm not drinking and very active. I had gestational diabetes but my A1C has always been around 5.4-4.6. I had Graves disease which turned into Hypothyroidism after treatment. I'm taking Levothyroxine for the last 20 years and my hormone has always been in the normal range.

I'm totally shocked as this came all of a sudden. Initial bloodwork looks fine. No deficiency in any nutrients. I'm reading all of the stories on Reddit and they gave crazy anxiety. However, given all of the symptoms, I'm 99 percent sure that I'm having neuropathy.

I'm not sure what I'm trying to ask for here. I'll do all of the tests to find out the cause (if any). But I'm so scared, frustrated and sad right now. How can I get back to my feet and move on?

Hong

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carolynhughes75 | @carolynhughes75 | 17 hours ago
In reply to @celia16 "Do you recall being exposed to covid? I have had similar symptoms and a year later..." + (show)
@celia16

Do you recall being exposed to covid? I have had similar symptoms and a year later and after many tests, am not certain why, although there are several theories.

Meds help some people with symptoms. Is the specialist you are seeing a neurologist? I hope you ate able get relief. I know how distressing this can be.

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I developed AIDP, acute inflammatory demyelinating polyneuropathy as a complication of covid. HORRIBLE neuropathy pain, weakness and loss of reflexes. Could be this.

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1 reply
honghtt | @honghtt | 14 hours ago
In reply to @carolynhughes75 "I developed AIDP, acute inflammatory demyelinating polyneuropathy as a complication of covid. HORRIBLE neuropathy pain, weakness..." + (show)
@carolynhughes75

I developed AIDP, acute inflammatory demyelinating polyneuropathy as a complication of covid. HORRIBLE neuropathy pain, weakness and loss of reflexes. Could be this.

Jump to this post

Hi @carolynhughes75

Thank you for your response. I just looked up the symptoms for AIDP and those sound so scary. Were you hospitalized at one point? How did it happen to you?

At the moment, I don't feel a lot of weakness in my limbs (yet), so I'm not sure if my symptoms tick all the boxes for AIDP. However, I just have this for 2 weeks and so it's still a possibility.

How are you these days? Have you fully recovered?

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1 reply
honghtt | @honghtt | 14 hours ago
In reply to @chrisanon "Sorry to hear this. Not a dr- but lots of "experiences and hindsight" - have you..." + (show)
@chrisanon

Sorry to hear this. Not a dr- but lots of "experiences and hindsight" - have you been on any antibiotics recently or even as long as a year ago? Check the BlackBox info you won't see on the meds themselves. Dig in. For Sure, CIPRO can cause not only ruptured tendons, but neuropathy and much more. It's a fluoroquinolone. Cephalosporins are nasty, too. I had to go through a drug challenge to prove what I said was true- that I had very adverse reactions. I am told it's not a true allergy to antibiotics if asphyxiation, rash, or streaks are not involved. In my case, they are, but I also got oral tingling that exhasperated my already known eosphageal Lichen Plans (which can also be drug induced!) Oral LP, derma LP, Lichen Sclerosus (horrible!) and swelling in limbs to the point I could not bend my thumb and index. Hope not the case. Always check BLACK BOX info which is always a work in progress. NIH, drugs.com, etc have the info. Double, triple check because info may be edited.

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Dear @chrisanon

Thank you for your response and all of the suggestions for the next steps. To be honest, I'm so overwhelmed with all of the possibilities. I didn't have antibiotics recently or in the last year. The only drug I took last year was a PPI for my heartburn/ gastritis and it was for 2 months only (I came off of it when I got better).

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honghtt | @honghtt | 13 hours ago
In reply to @debrn2005 "Hang in there! Wait till u have more info such as testing, Dr's exams, etc. Don't..." + (show)
@debrn2005

Hang in there! Wait till u have more info such as testing, Dr's exams, etc. Don't put the cart before the horse! U got this! 🤗

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Hi @debrn2005

Thank you so much for your encouragement. This is even better than the Amitriptyline that I got from my PCP in calming down my anxiety! I'll keep you posted of my next steps.

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1 reply
honghtt | @honghtt | 13 hours ago
In reply to @celia16 "High B6 is the one concern my neurologist had regarding too much of a vitamin. The..." + (show)
@celia16

High B6 is the one concern my neurologist had regarding too much of a vitamin. The result can be very serious and result in neuropathy symptoms. He warned me of multivitamins.

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Hi @celia16

Thank you for the info. I didn't know about this before. I'll bring it up in my next doctor appointment.

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chrisanon | @chrisanon | 13 hours ago
In reply to @honghtt "Hi @debrn2005 Thank you so much for your encouragement. This is even better than the Amitriptyline..." + (show)
@honghtt

Hi @debrn2005

Thank you so much for your encouragement. This is even better than the Amitriptyline that I got from my PCP in calming down my anxiety! I'll keep you posted of my next steps.

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You're welcome. Glad you got off the PPI I learned from my labs through my rheumatologist that Omeprazole was "suspected" of causing drug induced lupus after quite some time on it. I changed my diet. Other drugs also implicated, but this one was actually tested against labs. I heard recently, everything we need comes from the ground. Probably wise. I plan on getting off my HBP med because now I learn it may be causing my unexplained continued diarrhea, because it's known to damage intestinal villi. Not 100% sure yet but w discuss with my cardio since also on the drug induced list. Now I am checking Everything against Black Box warnings. Why this isn't mentioned to us as patients, I suppose is complex- time= money for professionals and big pharma= profits to dumb us down.

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carolynhughes75 | @carolynhughes75 | 8 hours ago
In reply to @honghtt "Hi @carolynhughes75 Thank you for your response. I just looked up the symptoms for AIDP and..." + (show)
@honghtt

Hi @carolynhughes75

Thank you for your response. I just looked up the symptoms for AIDP and those sound so scary. Were you hospitalized at one point? How did it happen to you?

At the moment, I don't feel a lot of weakness in my limbs (yet), so I'm not sure if my symptoms tick all the boxes for AIDP. However, I just have this for 2 weeks and so it's still a possibility.

How are you these days? Have you fully recovered?

Jump to this post

I developed horrible peripheral neuropathy 3 weeks after having covid. Worse pain ever. Then it spread from legs to arms. Saw the neurologist. Had EMG and nerve conduction study and those tests confirmed the diagnosis. Luckily I never had to be hospitalized. I am into my 6th month now of pain, numbness and weakness. I never realized that peripheral neuropathy could be so painful.

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1 reply
honghtt | @honghtt | 8 hours ago
In reply to @carolynhughes75 "I developed horrible peripheral neuropathy 3 weeks after having covid. Worse pain ever. Then it spread..." + (show)
@carolynhughes75

I developed horrible peripheral neuropathy 3 weeks after having covid. Worse pain ever. Then it spread from legs to arms. Saw the neurologist. Had EMG and nerve conduction study and those tests confirmed the diagnosis. Luckily I never had to be hospitalized. I am into my 6th month now of pain, numbness and weakness. I never realized that peripheral neuropathy could be so painful.

Jump to this post

@carolynhughes75

I thought that there's treatment for AIDP? It's ivg or something similar?

My feet and legs are burning right now as I'm typing this to you. Sigh

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1 reply
carolynhughes75 | @carolynhughes75 | 6 hours ago
In reply to @honghtt "@carolynhughes75 I thought that there's treatment for AIDP? It's ivg or something similar? My feet and..." + (show)
@honghtt

@carolynhughes75

I thought that there's treatment for AIDP? It's ivg or something similar?

My feet and legs are burning right now as I'm typing this to you. Sigh

Jump to this post

I hope you get relief soon.

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