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

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

@honghtt

Hi John,

Thank you for your welcoming notes. I don't drink energy drink. I took a multivitamin and B6/B12 is included. My initial bloodwork shows no deficiency in vitamins.

Jump to this post

What about B6 levels being too high? B6 toxicity can cause neuropathy.

REPLY
@johnbishop

What about B6 levels being too high? B6 toxicity can cause neuropathy.

Jump to this post

Hello John,

I just took a look at my most updated bloodwork results and didn't see any test for B6. I'll ask for it when I see the next doctor next Tuesay. Thanks for the suggestion!

REPLY
@moorethrpy

My neuropathy started after my second covid Moderna vaccine. Mild at first but has progressed from my feet to my waist. Numbness increasing every EMG. No motor involvement. Diagnosed ideopathic but it could be related to my autoimmune disease(mild...just some inflammation in my hands) and possibly hydroxychloroquine over 10 years. I do watch intake of B vitamins so I don't over do it but have stopped the hydroxy as my bloodwork is almost normal..only elevated ANA at this point. It is a very scary condition and mine by evening is so uncomfortable. I have had vascular ultrasound but no vascular problems. I am not a diabetice, alcoholic or on chemo (other causes). I stopped gabapentin...I don't have pain ; only numbness anD gaba doesn't do a thing.

Jump to this post

Hi @moorethrpy,

I have numbness, tingling, electric shocks, and burning sensation :-(. To be honest, since the timing is far between my latest vaccination and my onset, my doctor said that it's less of a cause. She's suggesting Gabapentin but I'm still on the fence. I do have health anxiety so she said Gabapentin will help both of my problems. However, I read stories about how hard to get off of Gabapentin, so I'm still reluctant for now. But if the pain intensifies, I may have to give in :-(.

Did you ever find out what caused your neuropathy?

REPLY
@debrn2005

I have non-diabetic neuropathy also. My neurologist says it's from long-time alcohol abuse (currently in recovery). There here well could be a vascular/arterial component to it also. Have u have Doppler ultrasounds done on your legs? Worth looking into. I am a nurse and do a lot of research on my own. You have to be your own advocate. Good luck. U shouldn't have to suffer. Referrals to neurologist and/or vascular (vein) specialists may be helpful also.

Jump to this post

Hi @debrn2005

Thank you for your response. I haven't got the ultrasound done on my legs yet. However, my neuropathy is on 4 extremities, do you think that vascular disorder on the legs can cause that (both hands and feet, not just feet)?

You said that you're a nurse. Are you still working? I'm so worried that this disease will force me to quit. I have two young kids and I'm the bread earner in the family, sigh

REPLY
@honghtt

Hi @debrn2005

Thank you for your response. I haven't got the ultrasound done on my legs yet. However, my neuropathy is on 4 extremities, do you think that vascular disorder on the legs can cause that (both hands and feet, not just feet)?

You said that you're a nurse. Are you still working? I'm so worried that this disease will force me to quit. I have two young kids and I'm the bread earner in the family, sigh

Jump to this post

Peripheral neuropathy can be in legs, feet, hands and arms. Yes I'm still working but PT due to many issues in addition to neuropathy in hands, feet and up one leg almost to the knees. I'm semi-retired and I'm almost 60 yrs old. There are medications that can help such as gabapentin, amytriptyline, SSRIs (antidepressants), etc. A neurologist can help u find the right med. I also wears compression stockings specifically for neuropathy and orthotic sneakers for extra support. It's the lack of feeling or sensation when walking to be able to know if they are solidly on the ground. I look at my feet often to double check especially when on uneven surfaces. With the hand numbness, get tested for carpal tunnel syndrome to rule that out because the treatment can be as simple as wearing wrist splints. Do your research for options available. Try not to self diagnose and convince yourself u have this or that. Do it just for informational purposes in order to advocate for yourself and get the Dr's opinion on your findings. By the sound of your message you're already "preparing" to not be able to take care of your children. Don't allow yourself to go "down the rabbit hole" Don't go too far ahead of yourself. Regards.

REPLY
@debrn2005

Peripheral neuropathy can be in legs, feet, hands and arms. Yes I'm still working but PT due to many issues in addition to neuropathy in hands, feet and up one leg almost to the knees. I'm semi-retired and I'm almost 60 yrs old. There are medications that can help such as gabapentin, amytriptyline, SSRIs (antidepressants), etc. A neurologist can help u find the right med. I also wears compression stockings specifically for neuropathy and orthotic sneakers for extra support. It's the lack of feeling or sensation when walking to be able to know if they are solidly on the ground. I look at my feet often to double check especially when on uneven surfaces. With the hand numbness, get tested for carpal tunnel syndrome to rule that out because the treatment can be as simple as wearing wrist splints. Do your research for options available. Try not to self diagnose and convince yourself u have this or that. Do it just for informational purposes in order to advocate for yourself and get the Dr's opinion on your findings. By the sound of your message you're already "preparing" to not be able to take care of your children. Don't allow yourself to go "down the rabbit hole" Don't go too far ahead of yourself. Regards.

Jump to this post

@debrn2005

Thank you so much for the info and your advice of not going too far of myself. All of my symptoms tick the boxes so I feel like this must be the reason for my problems. My feet burn at night and I'm terrified of the future, and I couldn't sleep much for the last few days :-(. Talking about the vicious cycle of anxiety that feeds on an emerging problem 🙁

REPLY
@honghtt

Hello John,

I just took a look at my most updated bloodwork results and didn't see any test for B6. I'll ask for it when I see the next doctor next Tuesay. Thanks for the suggestion!

Jump to this post

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.

REPLY
@honghtt

@debrn2005

Thank you so much for the info and your advice of not going too far of myself. All of my symptoms tick the boxes so I feel like this must be the reason for my problems. My feet burn at night and I'm terrified of the future, and I couldn't sleep much for the last few days :-(. Talking about the vicious cycle of anxiety that feeds on an emerging problem 🙁

Jump to this post

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! 🤗

REPLY

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.

REPLY
@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.

Jump to this post

No Covid thank God. See neurologist next couple of weeks.

REPLY
Please sign in or register to post a reply.