New to Neuropathy 2 months.

Posted by grovercleveland @grovercleveland, Jan 19, 2021

November 2-1/2 weeks prescribed Steroid cream for Grovers, Later went for followup. Three complaints (red hands, itchy hands, mild pins and needles. He said I had neuropathy. I asked coincidental after Steroid on skin.
He said age (I am 78..But Ride bike, rolleblade, water ski, work on antique cars ,A1C=5.6, Quite healthy),
till I wore a new dark green Tee Shirt to bed before washing it. In 2 weeks chest broke out in blisters. That is how the story started.
My neuropathy is mild. Like flys stopping here and there on my body. I scratch once or twice and gone. However the land some other place.

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

@bethunger

This is my first posting, so I am new as well. I used to ride, run and hike. They don't know what caused my neuropathy, but it is absolutely miserable. I so miss riding my bike. My feet and legs hurt too much afterwards to keep giving it a try. Such a great loss that I never saw coming. I hope your neuropathy stays mild and you can continue your active life.

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I'm very new to this and don't really know what to say so I'll give a short version. My neuropathy, my doctors tell me, is due to alcohol abuse. i am a year completely clean now after spending 30 days in a very excellent rehab facility. on the other hand I'm dealing with this horrible neuropathy that just continues to get worse in my own mind. I've been on gabapentin the past year and am currently on the maximum dose of 3,600 mg daily, or I think I might go crazy, or have a seizure. I've always worked out and before being forced into early retirement I walked at least 10,000 steps a day in my last position. I've not been tested because I thought what's the use of a specialist diagnosing me for something I know I already have. I too miss riding my "very high dollar" street bike as well. Now it seems to substitute for a nice coat rack. Really sad too because I have this newly found zeal to want to work with young people about their own addictions. I'm on the right track, but I have to be honest, it does get me down at times. Thank God Covid is getting somewhat better!!!

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@spacewatcher

I'm very new to this and don't really know what to say so I'll give a short version. My neuropathy, my doctors tell me, is due to alcohol abuse. i am a year completely clean now after spending 30 days in a very excellent rehab facility. on the other hand I'm dealing with this horrible neuropathy that just continues to get worse in my own mind. I've been on gabapentin the past year and am currently on the maximum dose of 3,600 mg daily, or I think I might go crazy, or have a seizure. I've always worked out and before being forced into early retirement I walked at least 10,000 steps a day in my last position. I've not been tested because I thought what's the use of a specialist diagnosing me for something I know I already have. I too miss riding my "very high dollar" street bike as well. Now it seems to substitute for a nice coat rack. Really sad too because I have this newly found zeal to want to work with young people about their own addictions. I'm on the right track, but I have to be honest, it does get me down at times. Thank God Covid is getting somewhat better!!!

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Hello @spacewatcher, Welcome to Mayo Clinic Connect. You are not alone with the feeling that neuropathy can get you feeling down. It sounds like you have a good outlook on your neuropathy. One of the things that has helped me is to learn as much as I can about my condition and possible treatments, mainly by reading a lot of what other members having posted on their experience and doing my own research on different treatments. There are a few other discussions you may wish to join and learn what others have shared about alcohol induced neuropathy.

- Alcohol Neuropathy???: https://connect.mayoclinic.org/discussion/alcohol-neuropathy/
- Small fiber peripheral neuropathy and alcohol: https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share a little more about your neuropathy symptoms? Is it just your feet?

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@johnbishop

Hello @spacewatcher, Welcome to Mayo Clinic Connect. You are not alone with the feeling that neuropathy can get you feeling down. It sounds like you have a good outlook on your neuropathy. One of the things that has helped me is to learn as much as I can about my condition and possible treatments, mainly by reading a lot of what other members having posted on their experience and doing my own research on different treatments. There are a few other discussions you may wish to join and learn what others have shared about alcohol induced neuropathy.

- Alcohol Neuropathy???: https://connect.mayoclinic.org/discussion/alcohol-neuropathy/
- Small fiber peripheral neuropathy and alcohol: https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share a little more about your neuropathy symptoms? Is it just your feet?

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Thank you for your comment. My neuropathy was more of a nutritional vitamin deficiency which led to it John, but it's good to know I have friends out there that share. I will say that my faith in God has increased due to my situation and through Covid-19. One hobby I put down on list of 10 was leathercraft. I haven't done that since 7th grade. I feel it is somewhat good physical theory for my hands. Good to hear from you!

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@johnbishop

Hello @spacewatcher, Welcome to Mayo Clinic Connect. You are not alone with the feeling that neuropathy can get you feeling down. It sounds like you have a good outlook on your neuropathy. One of the things that has helped me is to learn as much as I can about my condition and possible treatments, mainly by reading a lot of what other members having posted on their experience and doing my own research on different treatments. There are a few other discussions you may wish to join and learn what others have shared about alcohol induced neuropathy.

- Alcohol Neuropathy???: https://connect.mayoclinic.org/discussion/alcohol-neuropathy/
- Small fiber peripheral neuropathy and alcohol: https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share a little more about your neuropathy symptoms? Is it just your feet?

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Thank you for your comments. I've been reading a lot about alcoholic neuropathy. Sites say it can take a few years to lead up to knowing and that very well might have been my case. It just seemed to come about all at once. Mine is throughout my body, from my forearms to my hands to hips, back and down to both feet. During cold months my right hand especially...I can't keep it warm! it's very difficult to even walk normal without pain and loss of muscle. You know, I DO NOT feel sorry for myself. This is a new chapter in my life. I intend to do what ever I have to do to keep going WITHOUT any form of alcohol and maybe help others in the process. Thanks to all for hearing me.

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@avmcbellar

Hi @jakedduck1 I agree we have to be careful with medications and supplements and their potential side effects. Our healthy existence is related to maintaining equilibrium within our bodies. Too much or too little of a substance can cause an undesirable chain of events. Sorry to hear you have struggled with seizures for so many years. Has the medications helped? The side effects must be awful. While in the ICU for my AVM, the physicians gave me Keppra. I had to continue taking it at home. I had felt all the side effects it was capable of. I hated taking it. I didn’t know how much of what I was feeling was due to the Keppra or due to me in order to help myself. After talking to my physician I was eventually weaned off the medication two months later. Luckily, I never had a seizure. Do you have dizziness, balance issues, or headaches? I believe drowsiness was one concern and warned no driving. How do you handle the side effects? Are you aware of the Keto diet? I know it is not an easy diet to follow to consume low carbs. I tried it for 6 months for weight loss with my husband. It was originally used to control seizures before medications were discovered. I believe low carbs help our nerves function better. One of our friends was also on the diet for weight loss. While on the diet his hand tremors went away. As soon as he got off the diet his tremors came back. I hadn’t realized I was helping myself then. At that time I didn’t pay much attention to the details of my symptoms with lifestyle changes. Best wishes. Toni

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hi i experienced a severe brain bleed in late july due to a fall, and now home and doing well. hospital put me on 750mg of keppra twice a day as a preventive of seizures (although no tests taken showed seizures). i have been on keppra since july thru october. i have had many side effects of this medicine which were not suitable. my neuro lowered the dosage in late september to half a pill twice a day. now in october, i have been told to take half of pill to once a day for 3 days, and then stop (where i am now). my question is should i expect any side effects due to withdrawal now that i am not taking keppra?

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Saw good doctor last week. 15 blood vials. 2 spine MRI's 24 hour urine top test for Mercury. He was recommended by a Woman dermatologist I saw. She had sent 3 patients there with good results. Waiting for results.

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@grovercleveland

Saw good doctor last week. 15 blood vials. 2 spine MRI's 24 hour urine top test for Mercury. He was recommended by a Woman dermatologist I saw. She had sent 3 patients there with good results. Waiting for results.

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15 vials that’s a lot!

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@grovercleveland

Saw good doctor last week. 15 blood vials. 2 spine MRI's 24 hour urine top test for Mercury. He was recommended by a Woman dermatologist I saw. She had sent 3 patients there with good results. Waiting for results.

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Hi @grovercleveland, You will notice that we moved your post into a previous discussion that you started so that members can easily follow your story and read your updates. It sounds like you are making progress with your treatment plan. Do you still consider your neuropathy to be mild?

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@johnbishop

Hi @grovercleveland, You will notice that we moved your post into a previous discussion that you started so that members can easily follow your story and read your updates. It sounds like you are making progress with your treatment plan. Do you still consider your neuropathy to be mild?

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After all the testing, the MRG showed very mild neuropathy in one foot.
The MRG doctor was great. Just like old time doctor. We spoke for quite a while.
Told him about how a dark green tee shirt I bought, and then slept with an electric blanket Sep 2020. I see now that I did not know that heat the following week made it worse. Chest and back blisters hurt so much that I had to spray lidocaine 4% every 2 hours till went to dermatologist that prescribed Triamcinclone Acetonide 0.1% twice a day to front and back.
Used 3 pounds in 16 days. (He never warned me not to get on hands, resulting in thin skinned hands. (looks like I am 90).
Back to the MRG doctor; He told me to get biopsy.
Saw the woman dermatologist Jan 31, Monday. She looked at my back and said Mastocytosis, and added that she had several patients with it, and mine looked benign.
Feb 15,2022 the biopsy report will come in.
HumBug!
See this link(https://www.nhs.uk/conditions/mastocytosis/)
The English have got their shit together .

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