Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

@johnbishop

Welcome @willec49, Neuropathy certainly has a lot of causes and the conditions could be related but I'm not sure anyone here can answer that question. You mentioned you have an EMG scheduled for Wednesday. It might be a question you can ask your doctor at a followup to the EMG when you get the results back. You mentioned being on medications. There are some medications that can induce peripheral neuropathy. The Foundation for Peripheral Neuropathy has a list here - https://www.foundationforpn.org/causes/other-drugs/ if you want to check and see if any you are taking are on the list.

Since you mentioned spinal stenosis, here is some information that may be relevant -- Spinal stenosis. A common cause of podiatric symptoms: https://pubmed.ncbi.nlm.nih.gov/9086718/
Do you think the new symptoms might be related to your spinal stenosis?

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Hi John, Thank you for your response to my query. To answer your question, I think my doctor might suspect a relationship between my spinal stenosis and the numbness, tingling, etc. in my feet in the first place which is why he ordered the EMG. I wouldn't be surprised if these new symptoms are a progression of whatever condition I already have.

Thank you for the links which I will certainly explore.

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To follow up on the link containing medications which may cause peripheral neuropathy, I find that many of the anti-arrythmia drugs can cause tingling and numbness of hands or feet, especially Amiodarone and also Flecanide which I have been taking for two to three years. Ironically, I was taken off of the Flecainide three weeks ago which would be counter-intuitive to my intensification of symptoms now. I was also on Metoprolol, a heart rate-reducing and blood pressure medication for that same period which can cause Peripheral Vasoconstriction but I have been off of that medication for about a year now.

Again, thank you for your insights which have caused me to conduct more research of my and material to present to my doctor, pending the results of the EMG.

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@bonniethompson1234

First day after I’m off of the amoxicillin, the pain in my knees has subsided, thank goodness.

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When i was young and had a penicillin injection, one of the allergy symptoms were all my joints seemed to be sore. Especially my knees. I also broke out in hives. it took a whole month to get over it.

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I supposedly got mine from a bad case of shingles that was misdiagnosed creating permanent nerve damage that after testing was diagnosed as peripheral neuropathy. Nothing was given me at that time. Years later I asked my rheumatologist for gabapentin and then my dentist told me about Cymbalta which my primary care prescribed. Some days are really bad even with the meds. I can’t stand or sit for too long without pain gathering momentum.

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@willec49

I started feeling numbness and minimal "pins and needles" with no pain in my feet about a year ago. My left leg also feels "heavy" as though carrying too much fluid but not swollen. A CT scan showed some spinal stenosis. Lately my symptoms have intensified with my feet feeling like cardboard, especially when lying and immobile and this morning, for the first time, I awoke to find a pulling sensation in the toes of the left leg and pain on the ball of that foot when walking. This is new. I have an EMG scheduled for this Wednesday. I am not diabetic but do have paroxysmal atrial fibrillation very well-controlled by medication and had a coronary ablation three months ago with results still to be determined. Could these conditions be related? Thank you.

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Hi,
I just read your post. It's Wednesday, so today you are having the EMG.
I hope you will tell me how it went, but most importantly what valuable knowledge it gives you .
I had a very painful experience with an EMG a few years ago, and it was "inconclusive." Now a different Doctor ordered another one and I do not see any advantage. I know I have PN. Maybe Small Fiber but the treatment is the same. So, how does EMG help? Knowing I have it because of XYZ is of no benefit in pain relief, is it? I have not been told any real advantage for this painful procedure. Maybe I need to be enlightened? Anybody? Thank you.

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My neuropathy stated years after intestinal bypass surgery for weight loss

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I got neuropathy years after having intestinal bypass surgery for weight loss

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@fala

Hi,
I just read your post. It's Wednesday, so today you are having the EMG.
I hope you will tell me how it went, but most importantly what valuable knowledge it gives you .
I had a very painful experience with an EMG a few years ago, and it was "inconclusive." Now a different Doctor ordered another one and I do not see any advantage. I know I have PN. Maybe Small Fiber but the treatment is the same. So, how does EMG help? Knowing I have it because of XYZ is of no benefit in pain relief, is it? I have not been told any real advantage for this painful procedure. Maybe I need to be enlightened? Anybody? Thank you.

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@fala My neurologist skipped the EMG and went right to the skin biopsy because he said if the EMG was inconclusive, we’d need to do the biopsy anyway. The biopsy was not painful, other than a slight poke of the needle to numb the area. Prior to visiting this doctor, I had no idea about SFN so it was worth it for me to get answers and begin to explore treatments/medication. To your point, you know you have it so why proceed with the EMG? Do you have other symptoms? Are there other underlying conditions they think need to be explored that can’t be pursued without positive test results? Sometimes insurance won’t cover certain tests or medication without other cause. That’s the only thing I can think of. I went through a bunch of tests after the positive SFN to look for an underlying cause. Nothing was found so they can only treat my symptoms, but if they were to find an underlying cause, sometimes treating that can help the neuropathy.

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@fala

Hi,
I just read your post. It's Wednesday, so today you are having the EMG.
I hope you will tell me how it went, but most importantly what valuable knowledge it gives you .
I had a very painful experience with an EMG a few years ago, and it was "inconclusive." Now a different Doctor ordered another one and I do not see any advantage. I know I have PN. Maybe Small Fiber but the treatment is the same. So, how does EMG help? Knowing I have it because of XYZ is of no benefit in pain relief, is it? I have not been told any real advantage for this painful procedure. Maybe I need to be enlightened? Anybody? Thank you.

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@fala My comment here is about your painful experience with your EMG. I know our pain tolerances are all different, but I’m wondering if your doctor may have had an off day when conducting it. I’ve had 6 or 7 of them over time for various reasons if not to monitor changes, and while it’s not the most pleasant experience, I wouldn’t have describe any of them as painful. Maybe a second or 2 of pain here and there with a certain prick, but to me, more tolerable than getting my teeth cleaned at the dentist. I’m sorry your experience was so painful - hugs!

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@boltz7555

@fala My neurologist skipped the EMG and went right to the skin biopsy because he said if the EMG was inconclusive, we’d need to do the biopsy anyway. The biopsy was not painful, other than a slight poke of the needle to numb the area. Prior to visiting this doctor, I had no idea about SFN so it was worth it for me to get answers and begin to explore treatments/medication. To your point, you know you have it so why proceed with the EMG? Do you have other symptoms? Are there other underlying conditions they think need to be explored that can’t be pursued without positive test results? Sometimes insurance won’t cover certain tests or medication without other cause. That’s the only thing I can think of. I went through a bunch of tests after the positive SFN to look for an underlying cause. Nothing was found so they can only treat my symptoms, but if they were to find an underlying cause, sometimes treating that can help the neuropathy.

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Thanks for responding! My EMG is a follow up after my x-ray showing no cartilage between 5 & 6 in my neck. Haha, maybe I am just..."a pain in the neck?" (Have to keep my sense of humor)
I try my best to trust my Doctors, but I have been disappointed with misdiagnosis in the past...(haven't we all?) Perhaps, as you said, there is a reason that is not obvious that this test will reveal. This Doctor shows caring, which is not ordinary!
Neuropathy is enough for a person to handle without all these other ailment coming my way. I spoke to Mother Nature and Father time to give me a break...but they don't even get along....so what do I expect?
Thanks again for responding.

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