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.

Seven years of trial and error. My best friends are heating pads and a hot bath. I know men may not be accustomed to soaking in a hot bath with various bubbles, oils and salts, but it is the best way for me to tame down my legs, hips and back. I also keep extra large heating pads in my reading and TV chairs. I use small pillows anywhere I need them for extra comfort and support. These days there are a lot of children’s decor bed pillows that are soft and fuzzy. So sometimes I end up with a fuzzy yellow sunshine pillow tucked under my arm, but oh well!
Soft clothing, warm socks - I realize that my home and wardrobe have gradually changed over the years to provide me physical comfort, when even my skin hurts.
My 90 year old dad has many of the pain issues that I do. He is very stoic, and has suffered for many years unnecessarily because of it (in my opinion). I have a different approach. I seem to be spending more time at home, so I have cozy nests.
Oh, and my bed! Don’t even get me started! Soft mattress topper, soft sheets … I do travel, and I pack whatever I need to make my hotel room more comfortable.
I can’t think of a single reason not to minimize my pain!

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@logman1

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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@logman1, I think it's great that you are searching for answers and learning as much as you can about your condition. I've been labeled pre-diabetic for most of my adult life. I have often wondered if it played a part in my neuropathy diagnosis. Since my diagnosis in 2016 I have continued to search for things I can do to help with my symptoms which are mostly numbness. Mine took place over 20+ years but I know others have had symptoms crop up quickly.

I've always been overweight and struggled for many yeas. My goal was to get healthier to hopefully lessen the neuropathy symptoms and lose weight to help with other health issues.
A few years ago I read a health blog by @LeeAase and it helped me with my struggle. Lee shared my story on his blog here - https://www.social-media-university-global.org/2020/08/john-bishops-journey/.

I really enjoyed this video and learned a little at the same time.
-- Dr. Jay Wortman - 'Undoing Atkins: A Cautionary Tale': https://www.youtube.com/watch?v=jIegMp5cWBY

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@mikeconnors1

@johnbishop Yes he labeled it neuropathy of the extremities (small fiber). Told me it was likely genetic as my dad has it though not nearly as pronounced for him. He feels it only in his feet. Dr offered to find a testing clinic be able to label the exact neuropathy in hopes that progress could be made on a cure. My onset was about 4 years ago but it seems to be getting worse much quicker now. Thank you for the resources I will dive in now. Has any one reported consistently tight muscles in the feet, calves and hamstrings in the forum. It’s odd because once stretched out the symptoms are much better but never feel like I’m fully stretched out so I’m wondering if this is more related to my active exercise routine rather than the neuropathy. Thanks again.

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I have the tight muscles. Through trial and error, I have found that water therapy helps the most. However, they return to tight.
I have SFN and fibromyalgia. I fought against the fibromyalgia diagnosis for years, probably due to the negative image it has in society, but I know I have it. I don’t think men get that diagnosis as often as women. One of the hallmarks is symmetry. Pain occurring on both sides of the body equally. There is so much more to it, but muscle stiffness is common.

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@johnbishop

@logman1, I think it's great that you are searching for answers and learning as much as you can about your condition. I've been labeled pre-diabetic for most of my adult life. I have often wondered if it played a part in my neuropathy diagnosis. Since my diagnosis in 2016 I have continued to search for things I can do to help with my symptoms which are mostly numbness. Mine took place over 20+ years but I know others have had symptoms crop up quickly.

I've always been overweight and struggled for many yeas. My goal was to get healthier to hopefully lessen the neuropathy symptoms and lose weight to help with other health issues.
A few years ago I read a health blog by @LeeAase and it helped me with my struggle. Lee shared my story on his blog here - https://www.social-media-university-global.org/2020/08/john-bishops-journey/.

I really enjoyed this video and learned a little at the same time.
-- Dr. Jay Wortman - 'Undoing Atkins: A Cautionary Tale': https://www.youtube.com/watch?v=jIegMp5cWBY

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Thanks John, I'll check it out.

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@johnbishop

Hello @tom01255, Welcome to Connect. It can be a little scary to have a skin punch biopsy and have a neurologist tell you that it gave you no clue to the cause. You are not alone. Many of us have idiopathic small fiber neuropathy and it can be difficult to pin a specific cause when there are so many. I have not had a skin punch biopsy but did have a nerve conduction test along with physical exam. My neurologist thinks mine is mostly likely genetic but doesn't really know. I think what might be helpful for you is to learn as much as you can about your condition and possible treatments available. Two sites that really helped me learn more were:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Here are a couple of discussions that you may want to scan through to see if some of your symptoms match:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

You mentioned it started in the toes and now has spread to the arms and hands. Do you have pain or is it just numbness and some tingling?

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John- do you have any links to neuropathy and balance issue? My balance is “off”, if I pay close attention to foot placement and go slow, I can enjoy a daily walk (two times around the block). I took a hard fall two days ago- I think I caught a toe on a sidewalk square edge, no warning, suddenly finding myself crashing to the ground, hit my head, shoulder, knee hard, off to the ER, no broken bones, no concussion signs, but ordered to follow concussion protocol for three days.
Some members of my family are insisting I stop walking, but I can’t face that. I’m thinking a cane won’t help as the loss of balance comes so suddenly that foot catches something. Any ideas?

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@centre

John- do you have any links to neuropathy and balance issue? My balance is “off”, if I pay close attention to foot placement and go slow, I can enjoy a daily walk (two times around the block). I took a hard fall two days ago- I think I caught a toe on a sidewalk square edge, no warning, suddenly finding myself crashing to the ground, hit my head, shoulder, knee hard, off to the ER, no broken bones, no concussion signs, but ordered to follow concussion protocol for three days.
Some members of my family are insisting I stop walking, but I can’t face that. I’m thinking a cane won’t help as the loss of balance comes so suddenly that foot catches something. Any ideas?

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Hi @centre, There is a discussion I started in the Aging Well group that might be helpful. I have balance issues too and I can't walk very far due to back problems.

-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

I took a hard fall last winter going into an farm store because I missed a low entry concrete slab and didn't pick up my foot. I did a header into the glass door and fortunate for me the glass didn't break or crack and I semi caught myself on the way down. I've developed a senior shuffle for the winter time but sometimes I forget to be careful. I do have a cane but I haven't used it for a long time. I bought some trekking poles that help more than the cane. They also help me walk with my body and head more erect. They make walking a little safer for me -- https://www.amazon.com/gp/product/B00WTUVBMA/ref=ppx_yo_dt_b_search_asin_title

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I was going to suggest trekking poles too. You can find inexpensive ones at big box stores.

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I have some questions for anyone who has Paroxysmal Supra-ventricular Tachycardia. It has been awhile since I posted. I have SNF that is idiopathic and its non-length dependent. I have the pin pricks that are all over including the eyes. I was diagnosed last year with the SNF. I noticed a funny feeling in my chest last year and I thought it could be my palpitations acting up. I never felt that before. I had a holter monitor and it showed my heart rate was up at 183 so I was given Metoprolol. Well in June of this year I was sitting and watching TV and I noticed the funny feeling again and I checked my heart rate and it was only 97. So I went to another cardiology appt. and had a ZIO patch monitor. I really wasn't expecting anything, however, and I was shocked to hear I had the PSVT. I then went the next day to a Cardiologist who is an electrophysiologist and he looked at the ZIO results and told me that my PSVT was normal. I was not expecting that at all. I told him when my heart rate was up that they gave me Metoprolol and he told me that he doesn't like to give pills and if he had seen me originally he wouldn't have given the Metoprolol. As a health care professional I was too shocked to think about any other questions to ask. I went home and got on the computer and I actually read that it can be normal in some people. I know he is a very good Dr. but I wasn't expecting that at all. I told him I had SNF and he said he didn't know what that was. He said he would look it up and if he had another patient he would then be able to speak to it. I have weaned myself off of the Metoprolol because it is not helping me with that. I was also taking Magnesium for the palpitations but I took myself off of that because of other issues with taking it. I tried to get an appt at Mayo Jacksonville with cardiology but all of their cardiologists are full and are not taking anymore patients. I have been checking to see if there are any cardiologists that have treated and/or familiar with small nerve fiber. I know that SNF can affect the autonomic nervous system which includes the heart, your gut, your bladder etc. I have more questions regarding the PSVT. I also called Houston DeBakey Heart and Vascular and Birmingham and no luck. If I were to have sustained PSVT I go to the ER. Mine is short bursts of it. I appreciate any comments on this. I did read on Mayo about the autonomic neuropathy. First came the SNF then came the PSVT.

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@johnbishop

Hi @centre, There is a discussion I started in the Aging Well group that might be helpful. I have balance issues too and I can't walk very far due to back problems.

-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

I took a hard fall last winter going into an farm store because I missed a low entry concrete slab and didn't pick up my foot. I did a header into the glass door and fortunate for me the glass didn't break or crack and I semi caught myself on the way down. I've developed a senior shuffle for the winter time but sometimes I forget to be careful. I do have a cane but I haven't used it for a long time. I bought some trekking poles that help more than the cane. They also help me walk with my body and head more erect. They make walking a little safer for me -- https://www.amazon.com/gp/product/B00WTUVBMA/ref=ppx_yo_dt_b_search_asin_title

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Wow....those trekking poles look great. And they come in purple. I ordered them right away. When I was a real "trekker" I had some really pricey ones. I think these will be perfect.
Thanks John.
Chris

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I developed neuropathy after my first year in treatment for melanoma (now Stage IV). My neurologist has put me on 300mg of Lyrica, twice daily. I have also upped my dose of Cymbalta to 120mg daily, to help with the pain. I thought I heard that a rheumatoid specialist might be of benefit, but I have yet to follow that course of action

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