1. < Neuropathy

New to neuropathy, terrified and seeking advice from you guys

Posted by tom01255 @tom01255, Aug 21, 2022

I've had neuropathy in my feet for a couple of years, and the neurologist I consulted has never tracked down the cause. I didn't worry too much because it was just a numbness in my toes. This summer, though, it spread to my hands, up my arms, into my shoulders and into my legs. The neurologist did a biopsy and says that it gave no clue to the cause. He hasn't recommended any treatment, and my condition is worsening daily. I've contacted one university neuropathy clinic and been told that it will be a couple of weeks before they decide whether the doctors there will see me. I can't seem to get any medical personnel to take me seriously.

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

Mentor
John, Volunteer Mentor | @johnbishop | Aug 31, 2022
In reply to @logman1 "I'm sorry. I took have neuropathy . Started in feet overnight. In 2 weeks I was..." + (show)
@logman1

I'm sorry. I took have neuropathy . Started in feet overnight. In 2 weeks I was losing balance. 4 weeks using a walker. I don't think I have accurate diagnosis. I can't work ,I had a very high A1c (12) I was not aware of. Up to the point I got sick I was walking 2 miles everyday. I've had EMG test ,2 MIR's and a CT. I'm doing PT now....

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Hi @logman1, You mentioned in a previous post that you now have your A1C down to 7.8 from 12. Has that given you any relief with your symptoms along with the PT you are now doing?

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2 replies
jfn | @jfn | Sep 1, 2022
In reply to @mikeconnors1 "Any other methods to decrease the pain anyone else is using? My Dad is try inferred..." + (show)
@mikeconnors1

Any other methods to decrease the pain anyone else is using? My Dad is try inferred and seeing slight improvements. I’m taking gabapentin, 13 per day now for feet and legs. My Dr tells me it’s genetic and not cure. Pain in feet, numbness in hands, loss of balance, very tight in all lower muscles so I go to a place called stretch zone which helps get me fully stretched out to decrease the pain. Doctors have no answer as to why my muscles in feet, legs, and hamstrings are so tight.

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Hi @mikeconnors1
In May whilecleaning, I injurred my foot and had muliple acute sprains, tendinitis, tendonosis, and acute plantar fascitis. With my neuropathy this is a blast. The PT realised my legs were (wicked) tight and recommended myofascial massage and or regular massage. It is working to help the jam packed muscles. So, also I do yoga and stretching. My new thing to do is using a tigertail 3x a day. What a difference, for my legs! I also apply heat to my calves. The best day for my neuropathy and my muscles was soaking my feet/ legs in a salt water pool. I take baths in epsom salts , this was so much better. I hope you find something that relieves your pain, and your muscles.

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1 reply
dongoldwater | @dongoldwater | Sep 1, 2022
In reply to @kimegraves "My first question is, have you had an EMG done? If you physician doesn’t know the..." + (show)
@kimegraves

My first question is, have you had an EMG done? If you physician doesn’t know the cause than perhaps you need to see someone else! Is your physician a neurologist or someone that specializes in neuropathy? It took me almost a year and a half to obtain a diagnosis
and I had to change physicians and really insist that additional testing be completed until a diagnosis was made. Hang in there and keep us informed on your progress.
Kim

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what is an EMG? I am new to these issues.

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3 replies
mikeconnors1 | @mikeconnors1 | Sep 1, 2022
In reply to @jfn "Hi @mikeconnors1 In May whilecleaning, I injurred my foot and had muliple acute sprains, tendinitis, tendonosis,..." + (show)
@jfn

Hi @mikeconnors1
In May whilecleaning, I injurred my foot and had muliple acute sprains, tendinitis, tendonosis, and acute plantar fascitis. With my neuropathy this is a blast. The PT realised my legs were (wicked) tight and recommended myofascial massage and or regular massage. It is working to help the jam packed muscles. So, also I do yoga and stretching. My new thing to do is using a tigertail 3x a day. What a difference, for my legs! I also apply heat to my calves. The best day for my neuropathy and my muscles was soaking my feet/ legs in a salt water pool. I take baths in epsom salts , this was so much better. I hope you find something that relieves your pain, and your muscles.

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Goodness I feel like I shouldn’t complain with the injuries you have.:)

Thank you so much. That’s exactly what I was looking for. On one of the first posts the moderator suggested mayo fascial therapy so I’ve booked an appt. A massage also sounds like great advice for my legs. I’m embarrassed I hadn’t even thought of that. I’m not sure if I’m going to be a yoga person or not but I will probably give that a try as well. Thank you so much. I have not had much luck with doctors offering great advice so I certainly appreciate all your tips.

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1 reply
jfn | @jfn | Sep 1, 2022
In reply to @mikeconnors1 "Goodness I feel like I shouldn’t complain with the injuries you have.:) Thank you so much...." + (show)
@mikeconnors1

Goodness I feel like I shouldn’t complain with the injuries you have.:)

Thank you so much. That’s exactly what I was looking for. On one of the first posts the moderator suggested mayo fascial therapy so I’ve booked an appt. A massage also sounds like great advice for my legs. I’m embarrassed I hadn’t even thought of that. I’m not sure if I’m going to be a yoga person or not but I will probably give that a try as well. Thank you so much. I have not had much luck with doctors offering great advice so I certainly appreciate all your tips.

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I hope that you have some relief soon. The massage and the yoga help. I was not a yoga person before all of this. I am just trying everything I can to help myself so that I have no regrets in the future.

There are some really great doctors that listen, they are just harder to find than truffles.

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 1, 2022
In reply to @dongoldwater "what is an EMG? I am new to these issues." + (show)
@dongoldwater

what is an EMG? I am new to these issues.

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"Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). "
-- Electromyography (EMG) - Mayo Clinic: https://www.mayoclinic.org/tests-procedures/emg/about/pac-20393913

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kimegraves | @kimegraves | Sep 1, 2022
In reply to @dongoldwater "what is an EMG? I am new to these issues." + (show)
@dongoldwater

what is an EMG? I am new to these issues.

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EMG is electromyography. It is a diagnostic procedure that test how the muscle respond to nerve stimulations.

It is very helpful in the diagnosis of neuromuscular diseases.
Kim

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logman1 | @logman1 | Sep 2, 2022
In reply to @johnbishop "Hi @logman1, You mentioned in a previous post that you now have your A1C down to..." + (show)
@johnbishop

Hi @logman1, You mentioned in a previous post that you now have your A1C down to 7.8 from 12. Has that given you any relief with your symptoms along with the PT you are now doing?

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Unfortunately no better. I think I have reached a plateau. I was fine up until April 22, that was when feet numbness started. 2 weeks later losing balance. 1st doctor visit A1c 12. I was told I had been living 8 yrs with diabetes untreated. But I felt fine. Im only hoping that over time partial feeling comes back.

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1 reply
logman1 | @logman1 | Sep 2, 2022
In reply to @logman1 "Unfortunately no better. I think I have reached a plateau. I was fine up until April..." + (show)
@logman1

Unfortunately no better. I think I have reached a plateau. I was fine up until April 22, that was when feet numbness started. 2 weeks later losing balance. 1st doctor visit A1c 12. I was told I had been living 8 yrs with diabetes untreated. But I felt fine. Im only hoping that over time partial feeling comes back.

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John, I didn't mean to turn the conversation toward me. We are all looking for answers. It seems unbelievable this happened so quick but according to neurological its like well that's what it must be instead of that's what it is ?????

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