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Old 09-10-2018, 10:14 AM #1
RedRoan RedRoan is offline
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Join Date: Sep 2018
Posts: 9
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RedRoan RedRoan is offline
Junior Member
 
Join Date: Sep 2018
Posts: 9
5 yr Member
Default Introduction

Hello all,

Thanks for being here. It seems I've joined a club that no one wants to belong to. But the support here seems like it could be a real help.

I am 60 years old. 3 months ago I woke up with some decreased sensation in the sole of one foot. Prior to this I had been very active, hiking, etc, and in generally good shape.

Things have progressed to burning in both feet/toes, inability to tolerate much walking because it caused more pain as the day goes on, now some ankle involvement. Sleep is often impaired.

A month ago I had an EMG/NCV test which was essentially normal. The doc running the test gave a preliminary diagnosis of SFN, and my symptoms so far have been consistent with this. I have an appointment with a neurologist (UCSF) in a month to start working to an official diagnosis, probably by skin biopsy.

I do have some spinal issues (cervical and lumbar central stenosis, and moderate foramen narrowing at L5, so one doc gave a steroid injection at L5 to see if that helped. It did not help, unfortunately.

This thing has hit me like a ton of bricks, and has been life-changing. I used to relieve stress by going walking/hiking. Now if I try to do that I pay severely with pain later in the day. Very frustrating. I used to ski, but it looks like that will be just a memory from here onward. Sleep is often interrupted.

I have been started on gabapentin, up to 1500mg/day, working toward 1800 mg. Not much help so far. I do have some tramadol that helps a little, but no guarantee that they will refill that going forward.

My hat is off to those of you who have managed to cope with this for a long time; you must be very strong. I do hope I learn to deal with this better than I have been able to do so far.

Thank you all for being there!

-RedRoan
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Old 09-10-2018, 03:03 PM #2
Tinglehand Tinglehand is offline
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Join Date: Aug 2018
Location: Birmingham, AL
Posts: 11
5 yr Member
Tinglehand Tinglehand is offline
Junior Member
 
Join Date: Aug 2018
Location: Birmingham, AL
Posts: 11
5 yr Member
Default Welcome to the club

Quote:
Originally Posted by RedRoan View Post
Hello all,

Thanks for being here. It seems I've joined a club that no one wants to belong to. But the support here seems like it could be a real help.

I am 60 years old. 3 months ago I woke up with some decreased sensation in the sole of one foot. Prior to this I had been very active, hiking, etc, and in generally good shape.

Things have progressed to burning in both feet/toes, inability to tolerate much walking because it caused more pain as the day goes on, now some ankle involvement. Sleep is often impaired.

A month ago I had an EMG/NCV test which was essentially normal. The doc running the test gave a preliminary diagnosis of SFN, and my symptoms so far have been consistent with this. I have an appointment with a neurologist (UCSF) in a month to start working to an official diagnosis, probably by skin biopsy.

I do have some spinal issues (cervical and lumbar central stenosis, and moderate foramen narrowing at L5, so one doc gave a steroid injection at L5 to see if that helped. It did not help, unfortunately.

This thing has hit me like a ton of bricks, and has been life-changing. I used to relieve stress by going walking/hiking. Now if I try to do that I pay severely with pain later in the day. Very frustrating. I used to ski, but it looks like that will be just a memory from here onward. Sleep is often interrupted.

I have been started on gabapentin, up to 1500mg/day, working toward 1800 mg. Not much help so far. I do have some tramadol that helps a little, but no guarantee that they will refill that going forward.

My hat is off to those of you who have managed to cope with this for a long time; you must be very strong. I do hope I learn to deal with this better than I have been able to do so far.

Thank you all for being there!

-RedRoan
Sorry you have had to join the club under duress. I am sort of where you are except all my issues are hand and forearms. I am currently on 600mg gabapentin and sometimes seems to help a little, but not much. My EMG/NCV also came back normal. Most of my blood work was normal with some elevated levels of antibodies but not enough to classify as auto-immune root cause. I am scheduled to see the head of the department at UAB Neurology next year where a nerve punch biopsy may be done, but only after a detailed work up. I also have some forminal narrowing at C-5 and 6, but was told that it was indicative of someone my age (66). An anesthesiologist who would normally give the epidural said he felt sure it would not help my condition and that it seemed my issues could be auto-immune or metabolic. I hate not knowing the root cause for the only way to fix it is to treat the underlying issues. They can treat the symptoms all day long, but I'd rather treat the disease, whatever it may be.

My only advice to you is make sure you rule out auto-immune issues or diabetes and ask questions before the docter's run a bunch of tests to tell you what you already know. My first Neurologist ran the EMG/NCV again, not trusting the ones run 4 months before by another doc. The rheumatologist ran a bunch of blood work which had some tests that were run 2 months earlier. Sometimes I feel like a lab rat or a pin cushion!

Good luck with whatever things you try and read the posts made on this site. They have been quite informative for me and pointed me in directions to try to find the elusive answers for SFN.
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Old 09-10-2018, 09:13 PM #3
RedRoan RedRoan is offline
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Join Date: Sep 2018
Posts: 9
5 yr Member
RedRoan RedRoan is offline
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Join Date: Sep 2018
Posts: 9
5 yr Member
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Thank you, Tinglehand, for the good wishes and advice.
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