Hi

So I have been dealing with this issue for the last 6 weeks,and I am looking for advice/help from this community.

So basically my issue started off as a one of twitch on my thumb in the middle of December I work shift 12hours days/night,anyway whilst sitting at my desk my left thumb started to twitch I have never had that before and shook my hand after a little while this subsided.Fast forward to the end of the first week of January.I had just got out of bed to go to my night shift had a shower whilst getting ready I felt my whole body tingly/buzzing,This lasted for a day or 2 whole body tingling sensation...this than subsided and I started to get an itchy feeling on my body:legs,chest,arms,hands it felt deep inside my skin not on top..I had my wife check for any rash but ther was nothing,we put it down to maybe a reaction of some kind,after a few days again this subside but the slight tingling feeling stayed in my hands and to a extent my feet.So now we are in the second week or January I’m driving my car and I’ve felt this sharp prickly feeling in my right hand which than went to my left hand over a few days..the way I can describe is a sharp prickly sensation and also like a electric sensation which comes and goes all through the day with the slight tingle hands/fingers.I also delevoped this in my feet but not as severe.I tried not to worry and thought it will pass but it has not,so last week I thought il google my symptoms and see what comes up...It start mentioning PN or SFN which made my anxiety go up to 100!!!in that time I started to delevope whole body twitching in random places I’m sure I had this condition,blood test done B12 392 doctor said was normal..only thing came up was vitamin D deficiency everything was normal,I requested my doctor to refer me to a neurologist but the waiting on NHS is weeks/months..so yesterday I went to see a private neurologist in London who is a specialist in PN/SFN after telling him all my symptoms he does not think I have this condition..he said he sees patient with PN/SFN everyday and my symptoms don’t match..I don’t have constant pain like every second 24/7 or thankfully no burnining pain or shooting pain in my arms legs he did give me a diagnose of hypersensitive something,I can’t remember the full name,he also did a examination on me and my reflexes and feelings were fine.he said this will go over time and also prescribed me a small course of Pregabalin which he said should calm everything..my wife also asked him if “my husbands nerves are damaged”he said No.can someone please tell me if you think his right or does anyone have similar symptoms to mine.All my symptoms progressed within 1 and a half weekk.no gradual progression.they say symptoms get worse over time I’m only 6 weeks into this and scared symptoms will progress cold is also a big trigger when I’m driving at to work in the early morning or evening the sharp prickly pains come on more intense..I do trust the neurologist and the way he was very reassured I didn’t have SFN..can someone in this community help me does my symptoms sound like SFN?any advice will be appreciated

Your experience sounds very similar to mine. Checkout the recent thread, "Doc says no SFN, I don't believe him"

My experience started with mild pain and tons of fasciculations or muscle twitches. One doc suggested SFN and another BCFS or benign cramp fasciculation syndrome.
The symptoms started out mild and intermittent. One day they were there and the next completely normal.However, they progressed rapidly over 6 months. Sometime after, something changed and it got progressively better. However, my pain has stayed the same and my twitches are still present. After continually asking for a skin punch i finally got it and received a positive diagnosis for SFN a few weeks ago.

My advice would be to set up another neuro appointment (you can always cancel) and monitor how things are going. Push for the skin biopsy for peace of mind.

Hi thanks for the reply...i have just read your story,and your journey is sounding similar to mine,but I don't understand why the Neuro would dismiss small.fibre neuropathy?I choose him on purpose as he specialises in SFN..he listensed to my symptoms and i also did tell him I've been researching on the net and my symptoms do consist but he said NO I will be fine fine,when will I? I'm still.in pain,getting a biopsy on private is 2 much money..so it looks like I will be waiting for months until the hospital sees me!!I still can't believe why this thing has happened,wife is giving birth in the summer and honestly hope I'm not in pain or get worse..i need to find out what he diagnosed me with which I will put up on here for opinions

I feel your pain. The second neurologist i saw is a SFN specialist and he dismissed my symptoms as well. I trusted him until my toe went numb. Push for the skin biopsy and I pray it comes back negative.

Side note, I also understand your concern about your wife and future child. I have 2 children (1 & 3 years old). My daughter was planned when my doctor told me it was BFS and nothing to worry about... Now with my SFN diagnosis, I worry about how i will take care of them if this progresses. My wife does not make enough to sustain our family. This bothers me more than the disease...

With that said, it might be a good idea to get/increase your disability insurance prior to a skin biopsy. This way you lock in your rates at a low amount, instead of paying a premium or getting rejected post diagnosis.

Hey man thanks for the tip...I’m in the uk I don’t think it’s as easy getting a biopsy I did ask the neurologist a few days ago and he said privately it will cost £2,000..Can I ask what your symptoms are now?have they progressed since u first got this?my symptoms are predominantly in my hands..I really do hope the neurologist didn’t take my symptoms as anxiety because the pain is real.

Hi there. I'm in UK too. You need to see Proff Annand at Hammersmith Hospital for the biopsy. It's done on NHS. Where are you being seen in London?

For all this nerve damage and issues, I wouldn't ignore Grape Seed Extract which works on all circulation issues in the body. I've been working with supplements for 25 yrs thru thick and thin of it all.

There is a supplement thread at the top of this page that lists a lot of supplements used by members.

I am seeing prof Anand on Tuesday next week. I was wondering if I could speak to you Lou Lou? I am going for Suspected SFN and have some questions if you don’t mind?

Hi update:

So I have had my skin biopsy done for SFN..and it has come back negative!!!

My symptoms are not so intense as they wer once...i have an appointment with the speicialst in October.

Thanks

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One year update!!:

I haven't been on here in months but after remembering how hopeless I felt last year this time when my symptoms began and took over my life..I thought Il give an update.

I tired everything to get better I saw numerous Neuros,doctors,medication,vitamins,acupuncture u name I did...as I mentioned above my wife was pregnant at the time,btw i am now a proud father to a 5 month old baby boy!!

Around October time I started to feel less pain less twitching overall better and than I would have episodes of symptoms which would last for 1 or 2 weeks but over the months this has become less and less.

For people like me early 30s with these kind of symptoms and than googling them and finding forums wer people are in constant pain and no way to get better is not good for the symptoms and for mental state...I do feel sorry for people who actually have SFN and have been diagnosed but people who have not been diagnosed please do not jump to conclusions the main thing is the skin biopsy that will definitely tell you mine was negative,we live in a day and age wer we want everything fast unforuntalty our bodies will heal at its own rate and you also need to get the right environment to help it get better.Sometimes the human body needs time.

I feel the single biggest thing a person can do wrong is take STRESS since I managed to control the stress my body started to heal and I am now in a much better place I still sometimes get the odd zap here and ther or the odd twitch my hands fall asleep easily but over all I can report I'm living a normal life and pain free no change of diet or anything,my diet is mostly clean anyway but please drink plenty of water which is one thing I have done.

Ther is a lot of doom and gloom on these forums and if my post can help or give someone hope than I'm happy.
HAPPY NEW YEAR.

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