Neuropathy suddenly got worse. Not sure what to do.

Posted by chiller @chiller, Jan 17 2:49pm

I’ve had neuropathy in my feet for years. It’s like they fell asleep and won’t wake up. About 8 years ago my pinky finger went numb like my feet. I’ve seen a neurologist, he tested me, and he said I have neuropathy.

About a week ago I got a pain in my neck and both hands went numb, my legs got weak, and my mouth is going numb.

I've tried the usual medications. Cymbalta, Lyrica, etc. None of them worked.

The neurologist doesn't know what's causing it although I don't have diabetes. Until earlier this week, I didn’t have any pain or weakness or any other symptoms. Just numbness.

I saw a doctor for my kidneys yesterday for an unrelated matter and mentioned my neuropathy to him. He said it sounded like my spine was compressed somewhere. Someone else I talked to mentioned popliteal artery entrapment syndrome.

I'm not sure what to do. Any help is greatly appreciated.

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Welcome @chiller, You mentioned that the doctor you saw thought your symptoms may be related to nerve compression in your spine somewhere. Compressed nerves in the spine can cause neuropathy symptoms from what I've read. You said someone else you talked to mentioned popliteal artery entrapment syndrome but I think that mostly involves the leg or legs involved - https://www.mayoclinic.org/diseases-conditions/popliteal-artery-entrapment/symptoms-causes/syc-20465211

Are you able to get a referral to a spine doctor to see if you have some nerve compression in the spine?

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Will your neurologist order tests to see if it’s spine related? I intend to ask mine to do that at my next visit. I know this can be very distressing. I’ve had the numbness too. Some of mine is improving though.

Have they checked your Vitamin B12 levels?

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Thanks @johnbishop and @celia16 for replying.

I don't think my neurologist will give me an order for an MRI. He said I have "...polyneuropathy as diagnosed by symptoms and an EMG test. You do not have evidence for a pinch nerve."

I also asked about Vitamin B12 levels and he just dismissed it saying it wasn't that. What vitamin levels should I get checked? I think my primary care doctor will give me an order to do it.

I made an appointment with the Peripheral Neuropathy Clinic at Northwestern Memorial Hospital. Hopefully they'll be better at determining the cause and treatment. It's 5 weeks away though.

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I saw 2 neurologists and both looked at B12, because a deficiency (low)can cause symptoms of numbness, tingling, etc. Sometimes, it takes a good while to see improvement after starting treatment. My doctor told me it is important to get the test before starting treatment, because when you start it the actual number will be skewed.

Too much Vitamin B6 can be problematic. I would think your primary could check those.

I hope you can find some answers. The upcoming clinic visit sounds promising.

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Thanks. I'm looking forward he clinic visit. I think it will really help.

Sine checking vitamin levels is a simple blood test, I want to eliminate as much as possible before then.

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I was diagnosed with poly neuropathy of unknown origin when I was 21 and had nerve testing due to massive numbness throughout my body. It wasn’t until my son had nerve issues with pain from his elbows down to his finger tips and lost the use of his 4th and 5th fingers on both hands that he had nerve and genetic testing and was diagnosed with HNPP which is hereditary neuropathy with pressure palsies. Rare disorder that was the aha moment for me as well. We both have a lot of pain, numbness and muscle weakness issues. He had ulnar nerve transposition surgery on both arms to regain use of his fingers and stop the pain. I often get pain in my neck that goes down into my arms. It may last a day or a couple weeks. Numbness is a major issue for both of us.

There are lots of types of neuropathy. Polyneuropathy is a general term that just means it affects multiple nerves. It doesn’t identify the cause. HNPP generally starts in the 2nd or 3rd decade of life. My son and I both started having issues in our teens. I’m now 66 and he’s 41. Just throwing out one possibility you might consider especially if you’re young. If you are seeing a local neurologist, you might get a second opinion at Mayo or the nearest university hospital. Best of luck to you.

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@chiller

Thanks @johnbishop and @celia16 for replying.

I don't think my neurologist will give me an order for an MRI. He said I have "...polyneuropathy as diagnosed by symptoms and an EMG test. You do not have evidence for a pinch nerve."

I also asked about Vitamin B12 levels and he just dismissed it saying it wasn't that. What vitamin levels should I get checked? I think my primary care doctor will give me an order to do it.

I made an appointment with the Peripheral Neuropathy Clinic at Northwestern Memorial Hospital. Hopefully they'll be better at determining the cause and treatment. It's 5 weeks away though.

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B12 deficiency can make things worse and can be found with a simple blood test. On the flip side, I have had high B12 for ten years, double and triple the highest acceptable range even without supplementation. I recently learned this can occur if your ferritin is low because ferritin helps the B12 to be absorbed by your cells, so it isn't recycled in your bloodstream. B6 deficiency and toxicity are significant factors. I had mine checked for the first time, and it is double the highest acceptable value. I just now downloaded the Cronometer App to track my B6 intake. B6 has been a misunderstood supplement, and when deficient or in excess, it causes or exacerbates all kinds of neuropathies.

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@chiller

Thanks @johnbishop and @celia16 for replying.

I don't think my neurologist will give me an order for an MRI. He said I have "...polyneuropathy as diagnosed by symptoms and an EMG test. You do not have evidence for a pinch nerve."

I also asked about Vitamin B12 levels and he just dismissed it saying it wasn't that. What vitamin levels should I get checked? I think my primary care doctor will give me an order to do it.

I made an appointment with the Peripheral Neuropathy Clinic at Northwestern Memorial Hospital. Hopefully they'll be better at determining the cause and treatment. It's 5 weeks away though.

Jump to this post

I just commented about B12 and B6. Have you cut out the nerve-aggravating foods from your diet? Gluten, dairy, alcohol, sugar, caffeine, brown rice? If I eat any of those, my symptoms get way worse. I can tolerate gluten if it has been fermented in authentic sourdough made with whole grains and brown rice if I sprout it for 48 hours before cooking. Fermentation and sprouting change the chemical compositions.

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