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30 year old male SNF?need help

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Old 02-21-2018, 04:58 AM   #1
Shak2388
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Default 30 year old male SNF?need help

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¬ím driving my car and I¬íve 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¬ím 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¬ít match..I don¬ít 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¬ít 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 ¬ďmy husbands nerves are damaged¬Ēhe 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¬ím only 6 weeks into this and scared symptoms will progress cold is also a big trigger when I¬ím 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¬ít have SFN..can someone in this community help me does my symptoms sound like SFN?any advice will be appreciated
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Old 02-21-2018, 04:28 PM   #2
dtaijo174
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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.
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Old 02-21-2018, 05:21 PM   #3
Shak2388
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Quote:
Originally Posted by dtaijo174 View Post
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
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Old 02-22-2018, 10:23 AM   #4
dtaijo174
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Quote:
Originally Posted by Shak2388 View Post
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.
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Old 02-22-2018, 11:04 AM   #5
Shak2388
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Originally Posted by dtaijo174 View Post
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...Iím in the uk I donít think itís 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 didnít take my symptoms as anxiety because the pain is real.
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Old 02-23-2018, 05:11 AM   #6
LouLou1978
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Quote:
Originally Posted by Shak2388 View Post
Hey man thanks for the tip...Iím in the uk I donít think itís 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 didnít 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?
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Old 02-23-2018, 03:07 PM   #7
caroline2
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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.
__________________
OA onset at 18, now 79. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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Old 06-05-2018, 05:21 AM   #8
Loucharj
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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?
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 donít mind?
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Old 09-14-2018, 07:11 AM   #9
Shak2388
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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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