1. < Neuropathy

Neuropathy in feet and limited toe movement?

Posted by plbelanger @plbelanger, May 15, 2020

Just curious as I was diagnosed with peripheral neuropathy in the beginning of this year but have yet to see a neurologist about it (postponed till end of June due to COVID19). I have constant pins and needles, numbness, pain in both my feet. It's gotten worse over the years (been dealing with it for ~10 years and never went to a doctor about it due to lack of insurance) and now I can no longer even bend my big toes at all and even bending any other toes are rather difficult. Just wondering is this common...anyone else have this?

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 25, 2020
In reply to @johnbishop "@rwinney I know you are too young to remember Burma Shave signs along the road. They..." + (show)
@johnbishop

@rwinney I know you are too young to remember Burma Shave signs along the road. They were a real treat for us kids driving down the highway with mom and pop - reading the signs one at a time out load until you had the whole phrase. Loved those memories. Now if we could just plant some alongside the highway on your trip it could take your mind off of everything else 🙂

http://burma-shave.org/jingles/

Imagine driving down the road at 60 MPH and reading these signs one at a time to find out what the saying is. This one was one of my favorites from 1963.

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Hah! Love this John! So creative and what a wonderful nostalgic memory for you. 👍🏻😁

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 25, 2020
In reply to @rwinney "Hah! Love this John! So creative and what a wonderful nostalgic memory for you. 👍🏻😁" + (show)
@rwinney

Hah! Love this John! So creative and what a wonderful nostalgic memory for you. 👍🏻😁

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Cant believe it goes back to 1927!

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mjpm2406 | @mjpm2406 | Jul 25, 2020

I have the same neuropathy issues as you. Numbness in my feet, especially my toes. Can't bend my toes. Spasms and tingling are almost constant. Mine appears to be genetic as my mother, grandmother, brothers, uncles and cousins have similar symptoms. I went to a doctor at Stony Brook Neurology who's specialty is peripheral neuropathy last Monday and had a genetics test done. Simple saliva test, much like the Ancestry and Hereditary tests you've probably heard about. Results should be back in two weeks. The doctor suspects CMT or HSN but also tested me for MS, Parkinsons and ALS. She doesn't suspect those conditions but wants to rule them out. She said this test will show if any genes known to cause periphrtal neuropathy have mutated. She also wants to do a MRI of my neck. She said that peripherals neuropathy of the lower extremities can sometimes be caused by a pinched nerve in the neck. She mentioned C1/C2 so I assume that's the lowest disk in your neck. But she wants to wait for the results of the resgenetics test before going to plan B given my family history.

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1 reply
Hank | @jesfactsmon | Jul 25, 2020
In reply to @rwinney "@jimhd and @jesfactsmon Here's one for you guys...although I do remember this happening prior to my..." + (show)
@rwinney

@jimhd and @jesfactsmon Here's one for you guys...although I do remember this happening prior to my neuropathy diagnosis, I have tongue flares which leave my tongue highly sensitive and painful to salt and acidic foods, almost raw and any textured food (ex: raisins) scraping over it hurts. I went to an ENT doc about 4 years back and no reason was derived. My neuro just listened, along with all my other symptoms, and culminated SFN. My tongue gets inflammed and feels like (I would think anyway) a cat's tongue....you know, dry, like sandpaper. I literally ice it down or let it wag in a cold cup of water to soothe it. I know, TMI!!! Lol! Hey - if we cant laugh, we cant live. Anyway, I regress from high sodium, acidic fruits, tomatoes, etc... and let it ride out but, it's not pleasant. I used to chalk my oddities up to me being a "delicate flower" but, now I go with that damn neuropathy of mine as the culprit! What a pain in the #*@!!! 🙃

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Yup, I believe you are right. It's all connected to this nerve illness. You know, for your posts oday I looked for an emoji with a thumbs down and I can't believe there isn't one. Do people think every reaction one has deserves a thumbs up? Crazy.

Have you ever listed out every bad health symptom you have, every single one? It would first of all be interesting to see how many you come up with and secondly whether they might all be related to neuropathy, or if any seem not to be. Just a thought.

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1 reply
Hank | @jesfactsmon | Jul 25, 2020
In reply to @johnbishop "@rwinney I know you are too young to remember Burma Shave signs along the road. They..." + (show)
@johnbishop

@rwinney I know you are too young to remember Burma Shave signs along the road. They were a real treat for us kids driving down the highway with mom and pop - reading the signs one at a time out load until you had the whole phrase. Loved those memories. Now if we could just plant some alongside the highway on your trip it could take your mind off of everything else 🙂

http://burma-shave.org/jingles/

Imagine driving down the road at 60 MPH and reading these signs one at a time to find out what the saying is. This one was one of my favorites from 1963.

Jump to this post

I remember those John. Between reading those and looking and counting for "cats eyes" (59 Chevy's) we made the time pass in the back seat.

REPLY
Hank | @jesfactsmon | Jul 25, 2020
In reply to @mjpm2406 "I have the same neuropathy issues as you. Numbness in my feet, especially my toes. Can't..." + (show)
@mjpm2406

I have the same neuropathy issues as you. Numbness in my feet, especially my toes. Can't bend my toes. Spasms and tingling are almost constant. Mine appears to be genetic as my mother, grandmother, brothers, uncles and cousins have similar symptoms. I went to a doctor at Stony Brook Neurology who's specialty is peripheral neuropathy last Monday and had a genetics test done. Simple saliva test, much like the Ancestry and Hereditary tests you've probably heard about. Results should be back in two weeks. The doctor suspects CMT or HSN but also tested me for MS, Parkinsons and ALS. She doesn't suspect those conditions but wants to rule them out. She said this test will show if any genes known to cause periphrtal neuropathy have mutated. She also wants to do a MRI of my neck. She said that peripherals neuropathy of the lower extremities can sometimes be caused by a pinched nerve in the neck. She mentioned C1/C2 so I assume that's the lowest disk in your neck. But she wants to wait for the results of the resgenetics test before going to plan B given my family history.

Jump to this post

Hi @mjpm2406 I am sorry to hear about your issues, the spasms and tingling sound awful. I had not heard of testing genes specifically related to neuropathy. I didn't know there were genes for neuropathy, but it makes sense if its hereditary, i.e. multiple family members have it. And your doc thinks that some of the manifestations of your problems might be related to mutations of such neuropathy genes? Very interesting. Sounds like a good doctor, very inquisitive, you must feel lucky to have her. Best, Hank

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 25, 2020
In reply to @jesfactsmon "Yup, I believe you are right. It's all connected to this nerve illness. You know, for..." + (show)
@jesfactsmon

Yup, I believe you are right. It's all connected to this nerve illness. You know, for your posts oday I looked for an emoji with a thumbs down and I can't believe there isn't one. Do people think every reaction one has deserves a thumbs up? Crazy.

Have you ever listed out every bad health symptom you have, every single one? It would first of all be interesting to see how many you come up with and secondly whether they might all be related to neuropathy, or if any seem not to be. Just a thought.

Jump to this post

@jesfactsmon Sadly, yes I have. It's an ongoing list which I have sent to Mayo for my file. Here it is in all its messy glory.

A few things have settled or shifted since supplementing B12, taking Lyrica and the supplement protocol, but mostly I seem to be stuck with lasting problems. However, I continue to work on them everyday between PT, mild walking and body movement as tolerated and mindset. My PT was waiting until after Mayo to start an occupational therapy regimen, as now he only performs myofacial release once a week and rotates body parts to where the pain is at it worst. I cant wait until October for that. I've been waiting long enough. So, last week he gave me 4 mild, beginner exercises to start for my back. He had wanted to work off of Mayos designed plan for me. But, time is a wasting!
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3 replies
Hank | @jesfactsmon | Jul 25, 2020
In reply to @rwinney "@jesfactsmon Sadly, yes I have. It's an ongoing list which I have sent to Mayo for..." + (show)
@rwinney

@jesfactsmon Sadly, yes I have. It's an ongoing list which I have sent to Mayo for my file. Here it is in all its messy glory.

A few things have settled or shifted since supplementing B12, taking Lyrica and the supplement protocol, but mostly I seem to be stuck with lasting problems. However, I continue to work on them everyday between PT, mild walking and body movement as tolerated and mindset. My PT was waiting until after Mayo to start an occupational therapy regimen, as now he only performs myofacial release once a week and rotates body parts to where the pain is at it worst. I cant wait until October for that. I've been waiting long enough. So, last week he gave me 4 mild, beginner exercises to start for my back. He had wanted to work off of Mayos designed plan for me. But, time is a wasting!

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OK, firstly I believe you've got mindset down. Secondly, YIKES! That is some list! I have to look it over. I'll get back to you in a couple days. (Now where's that thumbs down thingy!)

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 25, 2020
In reply to @jesfactsmon "OK, firstly I believe you've got mindset down. Secondly, YIKES! That is some list! I have..." + (show)
@jesfactsmon

OK, firstly I believe you've got mindset down. Secondly, YIKES! That is some list! I have to look it over. I'll get back to you in a couple days. (Now where's that thumbs down thingy!)

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You make me smile 😁

REPLY
lorirenee1 | @lorirenee1 | Jul 25, 2020
In reply to @rwinney "@jesfactsmon Sadly, yes I have. It's an ongoing list which I have sent to Mayo for..." + (show)
@rwinney

@jesfactsmon Sadly, yes I have. It's an ongoing list which I have sent to Mayo for my file. Here it is in all its messy glory.

A few things have settled or shifted since supplementing B12, taking Lyrica and the supplement protocol, but mostly I seem to be stuck with lasting problems. However, I continue to work on them everyday between PT, mild walking and body movement as tolerated and mindset. My PT was waiting until after Mayo to start an occupational therapy regimen, as now he only performs myofacial release once a week and rotates body parts to where the pain is at it worst. I cant wait until October for that. I've been waiting long enough. So, last week he gave me 4 mild, beginner exercises to start for my back. He had wanted to work off of Mayos designed plan for me. But, time is a wasting!

Jump to this post

@rwinney Rachel, Oh Rachel, Oh Rachel!!!! What you are enduring!!!! This list is unbearable. Brutal. You so clearly have autonomic problems along with your small fiber problems. I am so overwhelmed reading this. I suggest that you prioritize your top 3 or 4 problems, so that the doctors have focus. But actually, your descriptions are variations of the same problems hurting various parts of your body. I still would start your final copy with the top 4, right on top. You obviously need testing for the autonomic stuff, too. I do too, actually, as I suffer from getting overheated and totally sweaty, out of the blue. I also feel like my feet are soaked, when they are not. I wish I could wave a magic wand and POOF!!!! All of us are better. By the way, this has nothing to do with sickness; my son also works in pharmaceuticals. He sells the high end cancer drugs to docs, hospitals, etc. One pill can be over one thousand bucks. Is there something wrong with that, or what??? And BIG PHARMA laughs! My son's sales goal for last year was 6 million dollars. Ha! Love you, Rachel Lori

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