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Small fiber neuropathy?
I never had a biopsy to dx it. I’m wondering if I have the biopsy does it make a difference in the therapies? A year ago I was dx’d with severe chronic nerve damage in lumbar and cspine: polyradiculopathy.
I have severe pain and spasms in lumbosacral back, legs and feet since 2021.
In the summer of 2023 I started (an continue having) get spasms in the trapezeous muscles on the right.
I’m currently flaring with bad pains to both shoulder that is crippling then after a long while it disappears. I developed lightning like pains to the bottoms of my feet and toes. The only thing that seemingly helps the surface pain is the lidocaine cream I apply. So far…
The neuromuscular doctor said last year no long fiber neuropathy per the nerve conduction study. She said I’d need a biopsy to determine if i have sfn.
An old nerve doctor said I had demyelination in left leg she thought secondary to diabetes. WEll, the diabetes hasnt climbed to damaging enough numbers to put me in flair much less cause the demyelination.
The foot dr last week gave referral for feet, for neuropathy and balance. So this confuses me. It all does.
I’d like to know if SNF can move around the body and cause the tingling in forarms and fingers and can the pain in SNF affect the very surface of the skin?
If someone can make sense of what Ive written I’d appreciate any help insight or feedback.
I have not received a diagnosis regarding the polyradiculopathy. I’m going to press the doctors for answers now because it’s really out of control.
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It is amazing how much you can learn from Anne Louise Oaklander. No wonder it is recommended that you request more than one skin biopsy. Things change in your body. Your small fiber neuropathy can become more intense which may require changes in the amount and frequency of the medications,
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3 ReactionsI'm curious if you ever had the small fiber biopsy and what happened. Your story, in some ways, is similar to me, and my neurologist suggested the biopsy but I have not gone that route as of yet. I hope the past year some doctors have brought some helpful insights for you.
Having the biopsy is the quickest and surest way to a diagnosis. That helps you, and your medical team. It’s an office procedure - no different than having a punch biopsy at your dermatologist’s office.
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2 ReactionsHow does it help though getting a diagnosis of small fiber? Isn’t the only option to treat the symptoms with meds? I’m debating how it would help me?
Well, my SFN is progressing. I have autonomic issues that can be explained by SFN. Digestive and bladder issues, progressive pain and weakness. Now I am having more and more dizziness. My physical therapists and doctors don’t have to figure out “why”. Maybe procedures , like nerve ablations for cervical spine related pain, won’t work, or make things worse.
It’s also important information for my pain doctor, and my hand surgeon. Etc etc.
Hi…I have neuropathy…also with some autonomic involvement…I’m 62. My balance has declined and fatigue/lack of energy has increased. I still walk 2-3 miles a day but it’s getting more difficult. In addition my anxiety has increased…as has shakiness at times. I’m assuming the autonomic involvement is the culprit in a lot of this. How long have you had the autonomic involvement? I’d say mine was tested for 4-5 yrs ago.
When I first get up it’s at its worst it seems…
Steve
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1 ReactionHi Steve - do you mean "get up" in the morning, or get up out of a chair? I definitely feel bad in the mornings. I rarely feel rested, and it takes a while for my body to adjust from sleeping to active. Then the dizzy spells start. So I find that I don't really feel well enough for dr appts, exercise, etc until at least late morning. This is so different from the person I used to be. It also means traveling has become impractical. I've traveled alone to NYC to visit my sons for the past 10 years. After my last trip, 18 months ago, I said "no more". I was sick for days. While in NY, I had dizzy spells, and bouts of diarrhea - in public places. The old me is gone, and the new me is controlled by pain, weakness, fatigue and my autonomic nervous system. If I need to know when the changes occurred, I can just look at my Facebook memories, or my old calendars, to see how much my life has changed. I am 64.
Wow, I'm really down this week. I do a remarkable job of getting through life with a decent attitude. Sometimes, like now, I do give in to self pity.
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5 ReactionsSorry I didn’t make that clear…I mean get up in the morning…I feel like a 62 yr old in an 80 yr olds body.
I also find going out to appt’s, shopping etc is becoming more difficult…and the nervousness associated with it because I’m not “ right”. I just turned down a European River cruise for next year because I’m afraid what I’d feel like.
It’s hard to remain “up” when it seems like I’m declining. I wish you well.
Steve
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2 ReactionsWithout the biopsy you can’t be treated and the small fiber neuropathy can’t be confirmed. One of the treatments isIVIG therapy but you have to have the biopsy to get the treatment. The longer it goes the more it progresses. I have lost feeling in my legs, hands, and organs including my heart. Now I live with dizziness, balance problems, my heart rate going up and down along with my blood pressure. It does progress and moves into your organs.
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1 ReactionI see. I don’t think I have an infection and my autoimmune lab tests don’t indicate an autoimmune condition. Still, I’m going to ask my neurologist about this. Who orders it….rheumatologist or neurologist?