New Diagnosis and Worried

[Letj]

I have always been healthy, except for some food and seasonal allergies. I am pretty active, especially so in the last 10 years. About a year or so ago, I notice my fingers were numb, especially my thumbs, but carried on without worrying about it. I assumed I was using my phone too much to text so I switched to a stylus. Three months ago, I started experiencing tingling in my hands, feet (especially at night) and numbness in my toes. I also started to react badly to cold weather and struggle to keep warm, sometimes swollen fingers if I am out too long in the cold (not related to Raynaud’s). I have had tingling in the feet on and off over the years, mostly after dancing in heels so I never worried about it but the numbness has got me concerned. Went to PCP who ran all kinds of tests for vitamins deficiency, autoimmune disease, kidney, A1C, etc, etc and all came back normal. I saw a neurologist early this week who, after doing some in-office tests such as pin pricks an measuring my response to a cold instrument, diagnosed me with Small Fiber Neuropathy (SFN). He gave me some vitamins and asked me to come back and see him in a few months. I do not have any pain and in the last three weeks, the tingling has subsided significantly but the numbness remains. I tried doing some research online but it’s universally bad news and frankly scary. It seems to suggest that it always gets worse and there are no treatment. I am scared to think of myself potentially being disabled by this. I’ve even seen scary stuff suggesting that it can involve your lungs and heart. This seems like a fairly common condition that many people live with, particularly diabetics. Do you know anyone or have you dealt with this condition to offer some advice/suggestions. This forum is a great community of people and I am on here almost daily appreciating all the wonderful contributions and felt compelled to share this. If you’d like to share your experience with SFN, could you also share your age of onset? I am 53.

 

[aja8888]

Two of my friends have Neuropathy but I don't know exactly what kind. Both are in their mid 70's and male. One guy has lost his calf muscle use and shuffles around, but can manage well. The other fellow has the "tingles" and can't feel the bottoms of his feet, but walks just fine and plays golf ok.

I really don't know if they take any meds for it, but I do know that their docs tell them to keep exercising.

Both have had this disease for several years.

 

[Jerry1]

I’m 61 and have have a similar story. SFN is basically the same as saying that they’re not sure what’s going on. It describes a condition rather than a cause. Read the book Sugar Crush (see below). I know that when I eat too much sugar, the numbness increases and the tingling does also. I’m not a doctor but it seems like the one who wrote this book is on to something. I know for me it touched home. Unfortunately, I’m human and have not done well with a sugar free diet.

Good luck on your journey. Make sure you’re taking B-12. Injections are better. I do them at home for myself.

https://www.goodreads.com/book/show/22492895-sugar-crush

 

[Letj]

Thanks aj8888 - seems like they both have a good quality life despite neuropathy. I guess the best you can do is to have a positive attitude and live your life.

I’m 61 and have have a similar story. SFN is basically the same as saying that they’re not sure what’s going on. It describes a condition rather than a cause. Read the book Sugar Crush (see below). I know that when I eat too much sugar, the numbness increases and the tingling does also. I’m not a doctor but it seems like the one who wrote this book is on to something. I know for me it touched home. Unfortunately, I’m human and have not done well with a sugar free diet.

Good luck on your journey. Make sure you’re taking B-12. Injections are better. I do them at home for myself.

https://www.goodreads.com/book/show/22492895-sugar-crush

Thanks Jerry1. Has it progressed and how long have you had it?

 

[mystang52]

I have no experience with SFN, but I strongly urge you to do some research for facilities (e.g., Mayo Clinic, Cleveland Clinic, Johns Hopkins) or doctors with particular expertise in SFN. Keep in mind that Mayo and Cleveland, as examples, have satellite locations so even if you do not live near the main campus you may still be able to access their expertise.
A specialist is critical for not just being up to date on the latest treatments, but also to confirm the diagnosis. I checked your ER profile. Like you, I was in my 50's when I got my leukemia diagnosis. My first concerns were getting to the right specialist (I live close to Sloan Kettering).....and what effect it would have on my running. Sloan Kettering eased my medical concerns, and I'm now going on 70 and still run 4 times a week.
I wish you the best. But to reiterate, before you focus on SFN, do that research to find a specialist.

 

[Letj]

Great advice. John Hopkins is closer to me. I’ll check out a specialist there.

 

[Jerry1]

Thanks Jerry1. Has it progressed and how long have you had it?

It was progressing. Basically, I was tingling up to about my knees and my hands were showing signs. Since I got with a holistic dr and got my vitamin deficiencies cleared up and eating better (not perfect by any means), my hands are pretty much normal and I can even feel my feet. It used to be that I couldn’t feel if the floor is cold. Imagine walking on a concrete slab in a house in the winter and not being able to tell it’s cold. Now I can. This journey has been around 15 years.

Let me be clear about holistic medicine. I don’t hold a belief that taking my vitamins and eating well will cure cancer, but I do strongly believe that working with a holistic doctor sets your body up in the best possible way for success. Search out anything you want with modern medicine. I did and they just didn’t have any answers. The holistic route helped me in this instance. I highly recommend you give it some thought. I also recommend you work with a holistic doctor that is actually an MD. During this process, my holistic doctor referred me to a neurologist and we ran tests that one wouldn’t normally associate with a holistic doctor. The consensus was that I had some type of autoimmune problem and they had no active recommendation. The holistic approach has seemed to help. Maybe it tamped down my inflammation, maybe it addressed a vitamin deficiency, I don’t know. All I know is that is seems better than it did 5 years ago. I wish you well on the journey.

 

[Aerides]

Have you had an EMG test? I ended up just having carpal/orbital tunnel, but this test was part of my diagnosis, and is far more in depth and catches a world of things. My symptoms were just like yours, except just hands so obviously you're different.

I'd also be looking beyond my PCP for any diagnosis and treatment plan at this point, as you're more into a specialty area. A Rheumatologist or similar. And physical therapy - likely there are specific exercises that are better than "stay active" to focus on the affected areas. I have some I learned to do for my hands and they've made a world of difference.

 

[Letj]

Have you had an EMG test? I ended up just having carpal/orbital tunnel, but this test was part of my diagnosis, and is far more in depth and catches a world of things. My symptoms were just like yours, except just hands so obviously you're different.

I'd also be looking beyond my PCP for any diagnosis and treatment plan at this point, as you're more into a specialty area. A Rheumatologist or similar. And physical therapy - likely there are specific exercises that are better than "stay active" to focus on the affected areas. I have some I learned to do for my hands and they've made a world of difference.

I agree. I have started the process to look for an alternative medicine doctor and have already started on some additional vitamins ( even though PCP found no deficiencies that would cause my problems). Carpal tunnel syndrome is easier to treat. With no under lying cause for SFN doctors just offer you pain meds.

It was progressing. Basically, I was tingling up to about my knees and my hands were showing signs. Since I got with a holistic dr and got my vitamin deficiencies cleared up and eating better (not perfect by any means), my hands are pretty much normal and I can even feel my feet. It used to be that I couldn’t feel if the floor is cold. Imagine walking on a concrete slab in a house in the winter and not being able to tell it’s cold. Now I can. This journey has been around 15 years.



Let me be clear about holistic medicine. I don’t hold a belief that taking my vitamins and eating well will cure cancer, but I do strongly believe that working with a holistic doctor sets your body up in the best possible way for success. Search out anything you want with modern medicine. I did and they just didn’t have any answers. The holistic route helped me in this instance. I highly recommend you give it some thought. I also recommend you work with a holistic doctor that is actually an MD. During this process, my holistic doctor referred me to a neurologist and we ran tests that one wouldn’t normally associate with a holistic doctor. The consensus was that I had some type of autoimmune problem and they had no active recommendation. The holistic approach has seemed to help. Maybe it tamped down my inflammation, maybe it addressed a vitamin deficiency, I don’t know. All I know is that is seems better than it did 5 years ago. I wish you well on the journey.

Wow. That’s awesome. I definitely think a holistic approach helps in this case. I’ve already started reducing inflammatory foods. Luckily, I’ve pretty much eaten healthy all my life so eliminating all added sugar and wheat is easy. I too believe mine is autoimmune. I have quite a bit of allergies and my daughter has Crohn’s but nothing shows up in my test results.

 

[Bamaman]

I'm a type II diabetic, and have a little neuropathy in my toes. It's very common and nothing worth a visit to any major hospital. Your primary care physician should be able to handle it. Chances are they'll just put you on Vitamin D.

My question to you is have you been checked for diabetes? You may have a problem that you don't know about. Diabetics don't know they're diabetic most often.

 

[Letj]

Yes. Completely checked out for diabetes and don’t have it so mine is idiopathic. There’s really no treatment because there’s no underlying condition to treat.

 

[daylatedollarshort]

Do you have any tight muscles / posture issues / trigger points? I have improved, though not completely solved yet, numbness and tingle issues in my arms with nutritional testing (suboptimal B12 and low in vitamin D so far) and bodywork, like yoga, foam rollers, acupressure balls, etc. I take sublingual B12.

I second the recommendation for nutritional medicine. My ongoing project is to do complete gut, vitamin and mineral, cancer biomarker, hormone etc. testing on DH and one of our relatives who is interested. We order the tests from places like Ombre (was Thryve), Ultalabs and Directlabs. It is pretty wild what we've found so far and been able to start correcting that doctors and specialists never test for. You can get like 100 times the information of what the regular doctors test for, if you can order tests like these on your own or through a functional medicine doctor.

 

[Letj]

Good suggestions. I am seeing a functional doctor soon and I’ll discuss those tests. I am in pretty good shape. I do yoga, Pilates, strength training but my posture needs some attention.

 

[retire to nature]

I am pretty sure if your thyroid level is normal since you didnt mentioned about the test which is included in main annual checkup. But is there any decreseing tendency value? you mentioned about cold temp. I have a dog with hypothyroidism which he takes gabapentin which is neuropathy med. Even though I have a RN background, I didnt know neuropathy and hypothyroidism relationship. Also, I am not a big fan of medical field which a busy doctor doesnt pay attention to decreased or increased value if it is still in normal range. (I found my dog's level going up to max level, no vet told me to cut down or anything.And it was some part of starting seizure too. I alwasys keep blood test result for myself and my dogs and adjust things). But hypothyroidism can cause blood circulation poorly especially to peripheral vessel can cause pain or numbness. if you drink coffee and make feel better with those feeling, you may be a bit hypothyroidism. Medical field is pretty much guessing game except few diagnosis. so take time and pay attention to your daily life style would help much since doctors dont know much about your daily life in a short counseling session.

 

[Montecfo]

I also have neuropathy. Different than yours but sounds similar. It is called HNPP. Hereditary. No cure. Progressive. Some stem cell or gene splicing therapies may help eventually as mine is genetic.

But doesn't kill you. May slow you down. I have lost feeling on my feet and there is some loss of balance.

I have had it all my life but only diagnosed 17 years ago.

Learn all you can. If you have not been too a neurologist, I recommend it, as there may be some steps they can take to learn the extent and maybe the source of your problem.

It seems profound now but time may be your friend. Time to get comfortable with things and to discover all you can. Time to stay active, healthy, positive and rested.
Many folks live with neuropathy and if you have to have a nerve condition, there are far worse things.

All the best in your journey, Letj!

 

[frayne]

Seventy year old male here with a condition and the symptoms OP described. Have had a myriad of tests and nothing conclusive. I have found a healthy diet, daily exercise and abstaining from alcohol does seem to help alleviate the pain and numbness to some degree. I golf regularly and walk at least 10,000 steps minimum a day, all of which seems to help and can say the condition hasn't greatly affect my quality of life. I've had this condition for the last four to five years and it doesn't seem to be getting worse. I do find cold weather and lack of sleep can aggravate the symptoms greatly. My PCP has offered medication to which the potential side effects seem worse than the problem itself and I have passed on the pharma approach which does little if anything to address the root cause. Good luck in your search and let us know if there is something we may be missing.

 

[Another Reader]

Long Covid caused peripheral neuropathy in the feet. Best treatment so far is Alpha Lipoic Acid. 600 mg once a day, twice if it's really bad. Doesn't get rid of it, but minimizes the problem.

 

[Letj]

I also have neuropathy. Different than yours but sounds similar. It is called HNPP. Hereditary. No cure. Progressive. Some stem cell or gene splicing therapies may help eventually as mine is genetic.

But doesn't kill you. May slow you down. I have lost feeling on my feet and there is some loss of balance.

I have had it all my life but only diagnosed 17 years ago.

Learn all you can. If you have not been too a neurologist, I recommend it, as there may be some steps they can take to learn the extent and maybe the source of your problem.

It seems profound now but time may be your friend. Time to get comfortable with things and to discover all you can. Time to stay active, healthy, positive and rested.
Many folks live with neuropathy and if you have to have a nerve condition, there are far worse things.

All the best in your journey, Letj!

Thank you. This is so heartening to read. A diagnosis like this can be scary for many, especially if you feel you have unfinished business such as being the mastermind of a business you run solo, youngish children, etc. I strongly suspect mine is genetic because in hindsight there were some clues from very early in my life - involuntary muscle twitching, tingling after walking or activity, the ocasional electrical jolts and cold hands and feet throughout life. They were so mild and ocasional, I just assumed these were normal for some people. I am not aware of any family members, past or present who had this condition. I never met my paternal grandmother and some others like my grandfather were gone before I was of age to get to know them. I thought of stem cell. There are some good stem cell clinics in Germany but I’ll have to research to see what’s being done in that area for neuropathy.

 

[Montecfo]

Yes. I had clues also going back to my teens.

There may very well be serious research programs which could provide help in the future. Meantime we adjust and continue in everything.

Oh another thing: seek a support group. There probably is one on Facebook or elsewhere.

 

[sengsational]

Long Covid caused peripheral neuropathy in the feet. Best treatment so far is Alpha Lipoic Acid. 600 mg once a day, twice if it's really bad. Doesn't get rid of it, but minimizes the problem.

Interesting. ALA inhibits TNF-α. Have you tried other things that do that, like Vitamin D and omega 3's?

 

[jim584672]

I had numbness and tingling running down my leg. Found out the attachments on my belt were pressing the nerve running down the leg causing the problem. Inflammation can press nerves as well.

 

[target2019]

TSH level checked?

 

[Letj]

TSH level checked?

Yes normal. Ran a boatload of tests, all normal. Tingling has progressed beyond hands and feet and is everywhere. I am thinking it could be allergies or autoimmune but no autoimmune from the variety of tests.

 

[Another Reader]

Interesting. ALA inhibits TNF-α. Have you tried other things that do that, like Vitamin D and omega 3's?

Omega 3 seems to have a slightly positive effect in general, but not really noticeable for the neuropathy. Vitamin D supplementation did nothing.

 

[target2019]

Yes normal. Ran a boatload of tests, all normal. Tingling has progressed beyond hands and feet and is everywhere. I am thinking it could be allergies or autoimmune but no autoimmune from the variety of tests.

Normal is a range. For any of the tests do you have a history of some kind? Some doctors want to find one magic reading to cure you. But your body changes over time, and tracking various measures can be informative.

Not saying that thyroid is the problem, just that measurements over time are more informative.