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Idiopathic Small Fiber Neuropathy Research

Posted by magnum52 @magnum52, Mar 29, 2021

This coming June, I will make a journey to the Mayo Clinic in Rochester, Minnesota seeking answers to my diagnosis of idiopathic small fiber neuropathy. This will be my last major effort in getting some kind of relief. I was diagnosed about 5 years ago (skin biopsy) and have tried gaba, Lyrica and Cymbalta. I am currently taking 300 mg of gaba ( got as high as 2,400 but it’s useless) and 60mg of Cymbalta. I retired from the pharmaceutical industry after 40 years, and was 62 when diagnosed. My major complaint is burning feet, especially the bottom of my feet. I exercise routinely.

From my research it appears that there is not a lot of research on the etiology of neuropathy, but more on palliative treatment, and not much of that. Mayo is considered the #1 neurology hospital in the country. Does anyone have any first hand information as to what research is taking place there, if any?

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

janet1959 | @janet1959 | Apr 5, 2022
In reply to @colleenyoung "Hi Joanne, welcome back to the discussions. I sent an email about your problem with posting..." + (show)
@colleenyoung

Hi Joanne, welcome back to the discussions. I sent an email about your problem with posting a comment to your own post so we can get to the bottom of the problem. We are not censoring you.

But back to you. I'm sorry to hear that COVID has delayed your appointment at Mayo Clinic. It was so exciting that you didn't have to wait a year for the appointment as originally thought and that the appointment was moved up, only to be cancelled because you caught COVID.

Have the COVID symptoms subsided now? Have you been able to reschedule your appointment?

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THANK YOU

REPLY
Nazir Khan | @nukhan | Apr 5, 2022
In reply to @stress "I’ve had SFN, i.e. PN in my feet for ~2.5 years. FWIW, I’ve been taking Oxycodone..." + (show)
@stress

I’ve had SFN, i.e. PN in my feet for ~2.5 years. FWIW, I’ve been taking Oxycodone and Methadone for severe pain. It was very effective for the first 2 years, now somewhat so and for a shorter period of time. This followed attempts with Lyrica and other SFN specific drugs, without any pain relief.

I have accumulated a number of esoteric research articles while looking for etiology and/or effective treatment. The bottom line for causation for me links the possibility of Statins and / or heavy alcohol use. I use Statins for CAD and will ask the cardiologist. I also drank a lot during college but quit over 40 years ago??? I’m wondering if ceasing the statins would help? Does anyone else link either of these possible causes; and how adjusting for them might be helpful?

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In reply to @stress I am sorry to hear about your situation. I am also suffering from SFN for the last 5 years. and am currently experiencing rapid progression on a daily basis. Although I never drank in my life I suspect statin and antibiotic ciprofloxacin to be the culprit in my case. Although I have not been using either of them from the day I was told that these may be the causation it didn't improve my conditions. In fact I am experiencing deterioration on a daily basis.

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2 replies
trishh | @trishh | Apr 6, 2022
In reply to @nukhan "In reply to @stress I am sorry to hear about your situation. I am also suffering..." + (show)
@nukhan

In reply to @stress I am sorry to hear about your situation. I am also suffering from SFN for the last 5 years. and am currently experiencing rapid progression on a daily basis. Although I never drank in my life I suspect statin and antibiotic ciprofloxacin to be the culprit in my case. Although I have not been using either of them from the day I was told that these may be the causation it didn't improve my conditions. In fact I am experiencing deterioration on a daily basis.

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I have SFN and feel its has progressed to both feet and up my legs. It hurts worse than my recent hip replacement surgery. As I work hard on my PT but and my hip as healing. Not SFN. They think mine came from undiagnosed Lyme disease.
No one knows what to do to help me and I've asked my neurologist to repeat nerve studies as its been 4 years. Wont see her until last of May.
Biopsies confirmed SFN. I didn't know how bad this stuff was ... I put ice packs on my feet to numb the pain.
May neurologist doesn't seem that familiar with SFN. Any advice on what I can ask her for help?
Thanks

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 6, 2022
In reply to @trishh "I have SFN and feel its has progressed to both feet and up my legs. It..." + (show)
@trishh

I have SFN and feel its has progressed to both feet and up my legs. It hurts worse than my recent hip replacement surgery. As I work hard on my PT but and my hip as healing. Not SFN. They think mine came from undiagnosed Lyme disease.
No one knows what to do to help me and I've asked my neurologist to repeat nerve studies as its been 4 years. Wont see her until last of May.
Biopsies confirmed SFN. I didn't know how bad this stuff was ... I put ice packs on my feet to numb the pain.
May neurologist doesn't seem that familiar with SFN. Any advice on what I can ask her for help?
Thanks

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@trishh, Mayo Clinic has a good list of questions on their site....

"What's the most likely cause of my symptoms?
Are there other possible causes?
What tests do I need?
Is this condition temporary or long lasting?
What treatments are available, and which do you recommend?
What side effects can I expect from treatment?
Are there alternatives to the primary approach you're suggesting?
I have other health conditions. How can I best manage them together?
Do I need to restrict activities?
Are there brochures or other printed material I can take? What websites do you recommend?"
-- listed near the bottom of this page: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

REPLY
2 replies
trishh | @trishh | Apr 6, 2022
In reply to @johnbishop "@trishh, Mayo Clinic has a good list of questions on their site.... "What's the most likely..." + (show)
@johnbishop

@trishh, Mayo Clinic has a good list of questions on their site....

"What's the most likely cause of my symptoms?
Are there other possible causes?
What tests do I need?
Is this condition temporary or long lasting?
What treatments are available, and which do you recommend?
What side effects can I expect from treatment?
Are there alternatives to the primary approach you're suggesting?
I have other health conditions. How can I best manage them together?
Do I need to restrict activities?
Are there brochures or other printed material I can take? What websites do you recommend?"
-- listed near the bottom of this page: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

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@johnbishop thank you for the list. Hopefully I can get some answers to SFN. I have PN as well.
Thanks again.

REPLY
Doug K | @dck | Apr 7, 2022
In reply to @trishh "I have SFN and feel its has progressed to both feet and up my legs. It..." + (show)
@trishh

I have SFN and feel its has progressed to both feet and up my legs. It hurts worse than my recent hip replacement surgery. As I work hard on my PT but and my hip as healing. Not SFN. They think mine came from undiagnosed Lyme disease.
No one knows what to do to help me and I've asked my neurologist to repeat nerve studies as its been 4 years. Wont see her until last of May.
Biopsies confirmed SFN. I didn't know how bad this stuff was ... I put ice packs on my feet to numb the pain.
May neurologist doesn't seem that familiar with SFN. Any advice on what I can ask her for help?
Thanks

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Why would they think that the SFN came from undiagnosed Lyme? Have you experienced other symptoms that lead them to that conclusion?

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trishh | @trishh | Apr 7, 2022

@dck They (docs) ruled out other possible causes. They say an infection or virus could cause it.
I went undiagnosed for years as I was living in Florida then. But my immunologist tested for Lyme and its confections, I had them all. Was paralyzed and neuropathy was found then. 1990.
I had been A State Park Ranger years before moving to Florida. So that is where they think I got Lyme..
Sorry you have SFN. I had the punch biopsies to confirm it. Have also periferral neuropathy affecting my motor nerves.
I don't see my neurologist until next month. Takes forever to get appointment here.
I want another EMG/NCT as its been 4 years and I feel its is progressive. Which I read is what happens with SFN.

REPLY
Doug K | @dck | Apr 7, 2022

I'm curious about what the difference is between Idiopathic SFN and saying that it could be caused by Lyme. Have you tested positive for Lyme? Over 40% of SFN cases are deemed to be idiopathic. What were the results of the biopsy? Mine were 1.79 with abnormal being anything below 2.9 and normal being 2.9-4.3. In terms of progression, I have read that there is a reasonable chance of progression, staying the same, or even improving.

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1 reply
magnum52 | @magnum52 | Apr 8, 2022

With idiopathic SFN there is no identifiable cause, period. I had 3 skin punch biopsies that confirmed SFN. MAYO in Rochester, MN could not identify any cause whatsoever.

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1 reply
magnum52 | @magnum52 | Apr 8, 2022
In reply to @dck "I'm curious about what the difference is between Idiopathic SFN and saying that it could be..." + (show)
@dck

I'm curious about what the difference is between Idiopathic SFN and saying that it could be caused by Lyme. Have you tested positive for Lyme? Over 40% of SFN cases are deemed to be idiopathic. What were the results of the biopsy? Mine were 1.79 with abnormal being anything below 2.9 and normal being 2.9-4.3. In terms of progression, I have read that there is a reasonable chance of progression, staying the same, or even improving.

Jump to this post

Forgot to mention my Lyme test was negative

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