New to Neuropathy 2 months.

Posted by grovercleveland @grovercleveland, Jan 19 1:31pm

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.

@grovercleveland, You may want to contact your doctor again. What you are describing sounds like a rare side effect of the steroid cream and not neuropathy. The information I found on Mayo Clinic's site mentions to contact your doctor immediately if you experience these side effects.

Hydrocortisone Probutate (Topical Application Route) – Side Effects: https://www.mayoclinic.org/drugs-supplements/hydrocortisone-probutate-topical-application-route/side-effects/drg-20073749

Did the doctor do any testing before diagnosing you with neuropathy?

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Triamcinolone acetonide and hydroxyzine oral were used. No Hydrocortisone Probutate. No testing for neuropathy. Will see GP for testing.

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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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@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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@bethunger
Hi, welcome to Connect. I am sorry to here this about your situation. PN can seem very tragic as it does rob one of many things that have given pleasure in life. My wife has had it for going on 7 years now (from chemo) and it breaks my heart sometimes to see what her life has been reduced to. She suffers so much, and hardly gets out at all, even before covid.

When did you start to have the symptoms, and when you say they do not know the cause, do you have any other ill health conditions that you suspect might possibly be related? My best to you, Hank

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@bethunger I'd like to extend my welcome to you as did @jesfactsmon. Thank you for joining the discussion and I am sorry to hear about your loss of activities you love.

Like Hank, I am curious how what your doctor has shared with you about your neuropathy diagnosis, especially in relation to the activities you love?

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@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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Hello @bethunger, I would like to add my welcome to Connect along with @jesfactsmon @amandajro and other members. I also have idiopathic small fiber peripheral neuropathy. It is a great loss when you can no longer do the things you really enjoy. Sometimes it helps when we can find other activities that allow us to find joy in our daily lives. I've found out that what helps me is to learn as much as you can about your condition so that you can better advocate for your health. Connect is a great place to learn what others with similar symptoms and conditions have shared that helps them.

Here are a few discussions and links that you might find helpful in your neuropathy journey:
– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
– Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
– Neuropathy Commons – great site for learning everything you ever wanted to know about neuropathy: https://neuropathycommons.org/

It sounds like riding your bike may be what you miss doing the most. Are you able to just ride shorter distances or is the pain still too much?

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Hello Hank-great name by the way. It is kind of you to welcome me. I am so very sorry about your wife's suffering. My diagnosis was for idiopathic. neuropathy. My doctor said it means they were idiots! funny man. It just means they don't know what caused it. When I couldn't run or ride any longer, I eventually became diabetic. Diabetes is often the cause for neuropathy, but I wonder how many diagnosis could have been the opposite of that. I started having tingling and pain about 10 years ago. I should say I did have a bout of Sepsis. I had that around 12 years ago. After quite some time in the hospital, I was thankfully able to come home. However, it left me with seizures that I still deal with. I wonder also if the Sepsis could play a factor in the neuropathic difficulties. Well, I sound as if I am rambling so I will close. I hope your wife and you find some further help so that she can reclaim her life a little. My best, Beth

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@bethunger

Hello Hank-great name by the way. It is kind of you to welcome me. I am so very sorry about your wife's suffering. My diagnosis was for idiopathic. neuropathy. My doctor said it means they were idiots! funny man. It just means they don't know what caused it. When I couldn't run or ride any longer, I eventually became diabetic. Diabetes is often the cause for neuropathy, but I wonder how many diagnosis could have been the opposite of that. I started having tingling and pain about 10 years ago. I should say I did have a bout of Sepsis. I had that around 12 years ago. After quite some time in the hospital, I was thankfully able to come home. However, it left me with seizures that I still deal with. I wonder also if the Sepsis could play a factor in the neuropathic difficulties. Well, I sound as if I am rambling so I will close. I hope your wife and you find some further help so that she can reclaim her life a little. My best, Beth

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@bethunger
Hello Beth,
Sorry to hear about your Neuropathy. I've had Idiopathic Neuropathy for 30-40 years although I thankfully no longer have the horrible debilitating various pain sensations associated with it. Now I just have numbness. It's too bad you developed seizures. I too have Epilepsy. Although we don't get a lot of people with seizure-related questions, I'd like to invite you to join us in the Seizure section of Connect. You may have questions yourself or be of help to others. Again, I hope you will join us. We are located here,
https://connect.mayoclinic.org/group/epilepsy-2bb359/
Did you have Diabetes at the time you developed Neuropathy symptoms?
The care,
Jake

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@bethunger

Hello Hank-great name by the way. It is kind of you to welcome me. I am so very sorry about your wife's suffering. My diagnosis was for idiopathic. neuropathy. My doctor said it means they were idiots! funny man. It just means they don't know what caused it. When I couldn't run or ride any longer, I eventually became diabetic. Diabetes is often the cause for neuropathy, but I wonder how many diagnosis could have been the opposite of that. I started having tingling and pain about 10 years ago. I should say I did have a bout of Sepsis. I had that around 12 years ago. After quite some time in the hospital, I was thankfully able to come home. However, it left me with seizures that I still deal with. I wonder also if the Sepsis could play a factor in the neuropathic difficulties. Well, I sound as if I am rambling so I will close. I hope your wife and you find some further help so that she can reclaim her life a little. My best, Beth

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@bethunger

Beth, your neuropathy might be related to your episode with sepsis. Here are a couple of article I turned up:
https://www.global-sepsis-alliance.org/news/2017/10/2/the-hidden-faces-of-sepsis-what-do-they-tell-us-focal-points-for-improving-patient-outcome
https://pubmed.ncbi.nlm.nih.gov/11757954/
Your diabetes certainly could be a contributor to PN, but the sepsis might be the origin. I'd be interested in your take.
I wish you well, Hank

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Hi Hank. Do you think you might have shingles? They cause blisters.

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@johnbishop

Hello @bethunger, I would like to add my welcome to Connect along with @jesfactsmon @amandajro and other members. I also have idiopathic small fiber peripheral neuropathy. It is a great loss when you can no longer do the things you really enjoy. Sometimes it helps when we can find other activities that allow us to find joy in our daily lives. I've found out that what helps me is to learn as much as you can about your condition so that you can better advocate for your health. Connect is a great place to learn what others with similar symptoms and conditions have shared that helps them.

Here are a few discussions and links that you might find helpful in your neuropathy journey:
– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
– Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
– Neuropathy Commons – great site for learning everything you ever wanted to know about neuropathy: https://neuropathycommons.org/

It sounds like riding your bike may be what you miss doing the most. Are you able to just ride shorter distances or is the pain still too much?

Jump to this post

Hi everyone. Just wondering, what is the test for neuropathy? It's often mentioned in posts. I have an appointment for a Complex Care Physical with my GP on February 10th and hope that might be something I could request for my neuropathy symptoms.
I am Diabetic (Type 2, well controlled), have Giant Cell Arteritis, IBD currently being investigated, and multi-other issues. I know, I am a Piece of Work!!
Thanks, Laurie

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@artist01

Hi everyone. Just wondering, what is the test for neuropathy? It's often mentioned in posts. I have an appointment for a Complex Care Physical with my GP on February 10th and hope that might be something I could request for my neuropathy symptoms.
I am Diabetic (Type 2, well controlled), have Giant Cell Arteritis, IBD currently being investigated, and multi-other issues. I know, I am a Piece of Work!!
Thanks, Laurie

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Hi Laurie @artist01, Here's a good summary of the diagnostic tests for neuropathy from Mayo Clinic – https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

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