Small Fiber Neuropathy

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

Thank you so much for your quick response. I am going to see a neurologist next week. I saw one when the symptoms very first started but all she did was rule out MS and send me no my way. It's not that I want the tests to show something wrong but there is something wrong. This is not in my head. I know something is wrong with the nerves. Maybe it's not advanced enough to show up on a test, although the symptoms sure do feel advanced. I was shocked that the EMG didn't show anything significant. Pretty sure my insurance won't cover a Mayo doc, but at this point I don't care if I pay out of pocket. I don't have a lot of money but I could try to get enough to cover it. Can I ask, in your experience do you think the muscle cramping/tightness, sharp pains and twitching be from SFN. I know you're not a doctor but you do have SFN, Right?

@bethb94

Thank you so much for your quick response. I am going to see a neurologist next week. I saw one when the symptoms very first started but all she did was rule out MS and send me no my way. It's not that I want the tests to show something wrong but there is something wrong. This is not in my head. I know something is wrong with the nerves. Maybe it's not advanced enough to show up on a test, although the symptoms sure do feel advanced. I was shocked that the EMG didn't show anything significant. Pretty sure my insurance won't cover a Mayo doc, but at this point I don't care if I pay out of pocket. I don't have a lot of money but I could try to get enough to cover it. Can I ask, in your experience do you think the muscle cramping/tightness, sharp pains and twitching be from SFN. I know you're not a doctor but you do have SFN, Right?

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Hi @bethb94, I have idiopathic small fiber peripheral neuropathy but have never felt pain only numbness with mine. I wrote a post with my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

It's not uncommon to have multiple symptoms and other autoimmune diseases with SFN. Your symptoms sound a little like restless leg syndrome – https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/symptoms-causes/syc-20377168. There is a discussion here on Connect that you might want to read through:

Groups > Brain & Nervous System > Restless Leg
https://connect.mayoclinic.org/discussion/restless-leg/

Does the muscle cramping and tightness occur at night? Also, do you stay hydrated by drinking a lot of water? The reason I ask is some people will get severe leg cramps when they don't drink enough water.

John

@johnbishop

Hi @bethb94, I think a lot of us have been where you are and I'm glad to see you are being proactive and learning as much as you can about your health condition. It can be unsettling to not have a diagnosis but don't give up. The National Institutes of Health page has some good information on diagnosis and treatment here:

NIH – Diagnosis and Treatment of Pain in Small Fiber Neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

Did your doctors schedule any more tests for you or an appointment with a neurologist or other specialist?

John

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By the way, thank you for the NIH link. I had seen that before. I just can't find anything that says my symptoms are related to SFN except the burning and pins and needles. I was just hoping somebody who actually has it could tell me if they have similar symptoms. Thanks again.

Thanks John, I would bet my life it's neuropathy and not restless leg but I appreciate the info. I am well hydrated. If I don't get any any answers I would definitely make an appointment at Mayo. I know that unless you have an autoimmune disease, have been on certain medications, have diabetes or cancer, neuropathy is usually diagnosed as idiopathic and only the symptoms can be treated. Although, I've recently read some promising advances made with stem cell treatments but there VERY expensive. I am wondering if Mayo Clinic offers this treatment. Thank you again for your quick responses. I appreciate the feedback.

@bethb94

Thanks John, I would bet my life it's neuropathy and not restless leg but I appreciate the info. I am well hydrated. If I don't get any any answers I would definitely make an appointment at Mayo. I know that unless you have an autoimmune disease, have been on certain medications, have diabetes or cancer, neuropathy is usually diagnosed as idiopathic and only the symptoms can be treated. Although, I've recently read some promising advances made with stem cell treatments but there VERY expensive. I am wondering if Mayo Clinic offers this treatment. Thank you again for your quick responses. I appreciate the feedback.

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Hi @bethb94, As promising as stem cell research is for a lot of things, I don't believe there has been any successful treatments for neuropathy. There is a good discussion you might want to read through on Connect:

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

There are also some warnings about all the stem cell clinics popping up.

Consumer Updates > FDA Warns About Stem Cell Therapies
https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm

@johnbishop

Hi @bethb94, As promising as stem cell research is for a lot of things, I don't believe there has been any successful treatments for neuropathy. There is a good discussion you might want to read through on Connect:

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

There are also some warnings about all the stem cell clinics popping up.

Consumer Updates > FDA Warns About Stem Cell Therapies
https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm

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Then why is mayo regenerative doing so much research and using stem cells.

@12061948

Then why is mayo regenerative doing so much research and using stem cells.

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Also here in Houston Methodist hospital is doing research and some treatments with stem cells.
Just has to be reputable clinic.

@12061948

Then why is mayo regenerative doing so much research and using stem cells.

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@12061948, I'm sorry if you misunderstood. I was specifically addressing stem cell treatments as they relate to treating peripheral neuropathy and there has been zero successful treatments as far as I know. If you know otherwise I would love to hear about it. Mayo Clinic is doing a lot of research and also doing a lot of stem cell treatments for arthritis and knees but I don't know of any clinical trials being done for PN. Here is one of their announcements:

Mayo Clinic finds surprising results on first-ever test of stem cell therapy to treat arthritis
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-finds-surprising-results-on-first-ever-test-of-stem-cell-therapy-to-treat-arthritis/

We had a guest speaker at the last meeting for the Minnesota Neuropathy Association that addressed the research being done across the spectrum for stem cell treatments. He closed his speech by telling us there is still some work to be done before stem cells can be used to treat neuropathy. I attached my notes from the meeting.

If I had the money, I would probably get a stem cell treatment for my bone on bone knee to see if it works. Mayo Clinic has done a lot in this area.

John

Shared files

18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)

@12061948

Also here in Houston Methodist hospital is doing research and some treatments with stem cells.
Just has to be reputable clinic.

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I agree that it would have to be a reputable clinic – hence the FDA warning due to all of the "stem cell clinics" popping up around the country.

@12061948

Then why is mayo regenerative doing so much research and using stem cells.

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I thought I came across that in my research too.

@andiej

Hi Brie
Please consider going to see Dr Todd Levine, a neurologist in Phoenix who knows a vast amount re SFN. PLUS he is fabulous and really a good listener. His staff is great too. He has authored a book with several other docs (including Ann Oaklander) re SFN. Good luck.!

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Has anyone seen Dr. Levine? From the research I have done on SFN it sounds like patients who have had doctors dig deep to look into deficiencies and diet have had the most success vs medications. Does he treat and find the cause? Thanks

@jforrer69

Has anyone seen Dr. Levine? From the research I have done on SFN it sounds like patients who have had doctors dig deep to look into deficiencies and diet have had the most success vs medications. Does he treat and find the cause? Thanks

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Hi @jforrer69, welcome to Connect. I have not seen him but have heard of him. Here is an article he did:

Small Fiber Neuropathy: Disease Classification Beyond Pain and Burning
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5912271/

I have idiopathic small fiber PN but do not have any pain. I only numbness and some tingling with mine so have never had to take any medications which are all directed towards addressing the pain of neuropathy.

Have you been diagnosed with small fiber neuropathy?

John

@kanaazpereira

Hello @lisadog33,

I’m truly sorry to learn about your diagnosis; however, as you will see, you’ve landed in a great community here. First, I’d like to introduce you to one of our Mentors, @johnbishop who has written extensively about small fiber neuropathy (SFN), and has share his experiences in many of the groups on Connect. If you wish, you can view a few discussions, here:

– Anyone here dealing with peripheral neuropathy? http://mayocl.in/2oeHFAG
– Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? http://mayocl.in/2oeSra7
-Does anyone have a treatment for Neuropathy due to chemo http://mayocl.in/2o96rVU

If you scroll through these discussions, you will see that John has provided some excellent links to resources.
I’d also like to tag @magg @cjkressin @brie87144 @islandhippy @lucille @rabbit10 @emilyanne @medic7054 @fleure @martid @painwarrior, as I’m sure they will have more insight for you.

With regard to your concern about the other symptoms, here’s what I found: According to this NIH (National Institutes of Health) page, http://bit.ly/2nyTseH, ” some affected individuals have urinary or bowel problems, episodes of rapid heartbeat (palpitations), dry eyes or mouth, or abnormal sweating. They can also experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting.”

Are you taking any medication for pain, @lisadog33? Do your symptoms get worse/better at certain times of the day or night?

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My name is Elisabeth. I am 71 years old. I have itching, burning and pain in both my arms. it used to be sporadic, more in the Summer and when stressed. I broke my left arm in three places walking a dog and i since have had these symptoms almost permanently with period of slight remissions. During the remission periods it is still very uncomfortable. When i have a serious episode, it is very painful. During the first five months after I broke my arm, I basically spent a lot of time in bed (not because of the fracture) but the stillness calmed my nerves. The pain clinic at Mayo prescribed Gabapentine which helped with the pain, but I slept 14 to 16 hours a day. I had to stop. I live in Phoenix Arizona. I can never be exposed to the sun or the pain will start. My sister who lives in France is afflicted with the same ailment. she is 72 years old. Her doctors have told her to live with it because it is a disease of the elderly. Another one told her that she has used all of her sun capacity (whatever that means-I have never heard of such a thing) and to stay indoors. The problem is that even when there is no sun we both go into lengthy and painful episodes. I have gone through several doctors but no one seems interested enough. I finally was able to recently see a Mayo neurologist. I really like him. He prescribed an EMG recently. I believe he will be the one to help me. Let us hope so. If anyone who reads this blog has the same symptoms,

Hello @lavieauxusa1972, welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy with only numbness and tingling in both of my feet and just above the ankles. I was diagnosed by a Mayo neurologist after an EMG, a few other tests and an exam. I don't really have any associated pain so there is not much they can do as far as treatments. I know stress can bring out a lot of different reactions and cause symptoms to get worse. I heard an 80+ year old neurologist speak a few years back at a Minnesota Neuropathy Association meeting and he made a joke (I think) about neuropathy. He said if you live long enough you will get neuropathy because nerve cells die eventually. He made the statement in a question and answer session after his and several younger colleagues had been asked how many people world wide are affected by neuropathy and the other two speakers mentioned a few world wide numbers first when he gave us his thoughts.

If possible, I hope you will be able to post again after your next appointment to let us know how your EMG went and if the neurologist provides a diagnosis for you.

John

Hi Lisa, first of all I'm sorry to hear of your diagnosis ( small fiber nueropathy,) because having it myself, I know the difficult road you are on. I just joined this group today, and hope to encourage others and be encouraged as well. I was diagnosed 10 years ago with Autonomic small fiber nueropathy, so a short answer to your question about your bladder being affected, yes, most definitely.
With the Autonomic part I have these issues daily, dry eyes, dry mouth, constipation, diarrhea, stomach aches, gas, nausea, feeling of fullness, feeling like I have to go often, problems urinating completely, starting and stopping, at night I go literally 5 times a night whether I drink or dont drink anything . So many other symptoms as well, heart palpitations, dizziness, hearing loss, tinnitus..
Any doctor should know that your nerves are responsible for so many actions in your body, temperature, heart rate, blood pressure, sexual function ect..
So on top of the other things we have deal with, messed up pain signals, we also have to deal with our daily bodily functions being messed with.
I am believing for a cure, and lean on God to get me through until then, if you ever need to just unload your frustration ( it needs to be done or else it can be overwhelming fighting this battle) I encourage you to do so here, because those of us who have this disease completely understand.
I pray Gods best for you
Dan

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