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Please, anyone, advice on SFN?

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Old 04-13-2019, 06:44 PM   #1
Sarah19901
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Default Please, anyone, advice on SFN?

Hi everyone,

I am from Australia so getting a skin punch for SFN is basically impossible... no neurologist will do them in Australia so I am left in an unknown state.

If anyone can please let me know if the following symptoms are (obviously impossible to say conclusively) SFN.

Started with
Twitching in my back, ears and chest

moved into my calf then feet

All twitching then disappeared except in my feet

Now in my feet there is a constant twitching and vibrating feeling. There is now some cramping.

There is no:
numbness
burning
pain
loss of sensation

I have been observed by two neurologists - nerve studies show no neuropathy but I know they can't detect SFN. No abnormalities in the vibration or pin prick test.

However the vibrating and twitching is unforgiving. It never stops ever.

If is SFN????

I would appreciate any answer, or any advice, I am desperate and have all but been abandoned by all professionals. One told me to go away as they can't help anymore.

All blood test profile came back normal, so did MRI.

I just need some advice, if I need to travel to another country to have the SFN sin punch done but I'd like to hear from some people whether or not they believe this is what it is
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Old 04-14-2019, 01:12 AM   #2
kiwi33
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Hi Sarah

Welcome to NeuroTalk .

I am sorry that you are having problems finding somebody who can do a skin punch for SFN. This site might help you; even if Sydney is not convenient for you they might know of another place which can Peripheral Neuropathy .

Best wishes.
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Old 04-18-2019, 06:34 PM   #3
janieg
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Hi Sarah,

If it makes you feel any better, I was diagnosed with SFN 5 1/2 years ago and have never had a punch biopsy. The reason I haven't is that neither neurologist I've seen felt it was necessary. The first said, "I know you have SFN, and all punch biopsy will do is confirm that. It will NOT tell us why you have it."

I have likewise had a jillion blood tests, MRIs, a nerve conduction study, spinal tap etc... and the doctors have no clue why I have this problem. If I had punch biopsy, it would come back positive or negative. If it came back positive, it would confirm the SFN diagnosis, and I would have idiopathic SFN. If it came back negative, I assume I would have an idiopathic "unknown" neurological problem. I'm not sure I see much difference between the two, so I haven't pushed for the biopsy.

I also have crazy twitching in my legs, especially after exercise, but it's not visible. I've had this twitching and vibrations in my left leg only since 1986. It wasn't until 2013 that it suddenly presented itself everywhere. Only recently have I developed a problem with horrible cramping, especially when I have too much salt.

Is your twitching visible? When my legs are twitching horribly, I can't see a thing.
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Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning (suspect mild dehydration); referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, and salt consumption makes my neuropathy 100x worse.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
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Old 04-21-2019, 04:53 PM   #4
Streetlegal
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My neuro advised me against having an kind of nerve conduction tests or biopsies done; he diagnosed me based on blood tests, ruling out MS (MRI) and lyme disease etc, but primarily on symptoms.

I could have tests done if I so wished, but I have no reason to doubt my neuro; I guess the only thing a biopsy or such like might indicate is some kind of baseline level of damage that I suppose could be monitored over time. Overall, though, I am clueless about the procedures for getting an "official" diagnosis and what use it might be.

I have constant calf fasciculations that started about 4 months after my initial symptoms (odd tingling and buzzing in finger tips, feet, legs). The twitching never stops, just waxes and wanes a bit--had it for nearly two years; I also developed eye-lid twitching in one eye which has (thus far) been treated effectively with Botox injections.

Alas, my initial symptoms of paresthesias continue, but now with burning and occasional nerve shocks--in other words, potential for pain.

Paul
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Old 04-22-2019, 03:08 PM   #5
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I agree with the others. (Probably not that big a deal to not get the skin punch. It seem like only a limited number of people do get it.)

The symptoms you described do sort of fit the type of odd symptoms that SFN causes. Mine started almost 5 years ago with a sudden onset of muscle tightness, then twitching and cramping. After many Dr. visits and tests still no diagnosis, but almost certainly SFN. Things got better but still some foot pain. I take some Gabapentin to control it. I'm still working in a job that keeps me on my feet a lot.

It seems no two people with SFN experience exactly the same symptoms. And no way to predict if it will get better, stay the same, or get worse. (The people who frequent the forum here tend to be ones with ongoing and progressive issues, but I think that's because the ones who get better don't see the need to continue coming here.) I like to come back at least once in a while to check in and let people know it's not necessarily doom and gloom
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Old 04-22-2019, 11:13 PM   #6
KnowNothingJon
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Default Unshockingly, to me, a dissenting opinion.

My neurologist said my EMG/NCS coupled with examination was plenty of proof of my impairment and for some time, it satiated me. Eventuallly he agreed to do a punch biopsy and it showed evidence of severe small fiber neuropathy. Having the numbers helped me, and honestly given some recent, unrelated medical testing Im glad I have it.

Ive had an endo/colonoscopy in the last month and both times encountered wide spread ignorance from the medical professionals involved. Endo it was the anesthesiologist, who really asked pointed questions. I actually ended up talking about the results, though as likely I was sensitive, as no meds for quite some time then.

Shout out to the two nurses who asked why I was uncomfortable looking and then seemed extra tender after.

Colonoscopy had a small reminder of how awful sfn can be in ways you dont encounter daily. The nurse ignored my pointing to where the IV went for endo. ill decide where she states, seconds before collapsing a vein in my hand. It felt like a hot needle was in there for at least 15 minutes. Same for the spot in my other hand. She got help, who made a third spot burn. Super pro was then called in, no pain.

The first nurse kept apologizing, and I kept absolving (holey Thursday, eh?) and all went well enough after, but so many had no idea about neuropathy, at least related to a somewhat younger looking fella, who still moves around rather convincingly, unless you know him well.

Anyway, I think if it will help someone feel their way through living with this, the paper could aid you.

My best,

Jon
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Old 04-23-2019, 03:12 AM   #7
Sarah19901
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Would anyone please suggest how I can sleep with the buzzing/ twitching sensations?

Is everyone taking medication to help sleep for SFN? I am thinking of quitting my job due to insomnia
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Old 04-23-2019, 09:28 AM   #8
MetroMom
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Hi Sarah,

I had constant vibrations and prickling in my feet too. I've been to several neurologists but they could not detect anything wrong. I was put on Lyrica. I've had numerous tests done but no abnormalities were found. Through the years, symptoms were getting worse. Whenever I mention this to my family doctor, he just increased my dose of Lyrica. It was very frustrating until my last blood test.

After undergoing a series of tests, the last neurologist told me there is nothing wrong with my nerves and to go back to my family doctor and "let him figure out what is wrong with you". She did mention however that I was pre-diabetic as my 2-hour glucose test result was high (9.9 mmol/L). My A1C is 5.7.

I started to watch my carb intake and stay away from sugar as much as possible. After a few months of doing this, I notice that I do not feel the vibrations anymore. There is still a lot of prickling but they do not keep me awake at night eventhough I took myself off Lyrica.

I still feel the constant prickling in my feet and calves but keeping my fingers crossed that these too will go away. If not, I guess I just have to live with it but I'm still happy that I'm off prescription medication.

Take care.
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Old 04-24-2019, 06:21 PM   #9
janieg
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Have you been offered gabapentin? Many people find that medication helps.

You will learn to filter out the buzzing/twitching with time. I only notice mine now when I think out. When it turns to burning, it's harder to ignore, but when it's not bad, I have no trouble ignoring it.

Quote:
Originally Posted by Sarah19901 View Post
Would anyone please suggest how I can sleep with the buzzing/ twitching sensations?

Is everyone taking medication to help sleep for SFN? I am thinking of quitting my job due to insomnia
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning (suspect mild dehydration); referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, and salt consumption makes my neuropathy 100x worse.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
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Old 04-24-2019, 09:28 PM   #10
Sarah19901
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Quote:
Originally Posted by janieg View Post
Have you been offered gabapentin? Many people find that medication helps.

You will learn to filter out the buzzing/twitching with time. I only notice mine now when I think out. When it turns to burning, it's harder to ignore, but when it's not bad, I have no trouble ignoring it.
How long did it take for yours to change from buzzing to burning? I'm very nervous about when that happens. I am finding my symptoms go crazy in the car, it's like the vibrations set the buzzing off. Does anyone else find this?
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