[LouLou1978]

Hello there,

For those of you who don't know my story, i have had symptoms of SFN from the end of 2012. I was 36 at the time, symptoms (not painful) but buzzing and funny feelings. Fast forward to 2014 when i saw a really good neuro who suggested this could be Non length dependent SFN. He sent me to London for a skin biopsy. The skin biopsy revealed increased nerve fibers, (which I have been told is very unusual). Neuro told me 80% of SFN suffers have reduced nerve fibers. He only sees about 20% with this presentation. It was indicated in the professor's letter who done the skin biopsy this was inflammation.


While i was completely stressed out about being told i had SFN within days the pain was horrific all over my body. My scalp was the worst. After a couple of months the pain subsided, I calmed down a bit and pain almost went away. I have been in this position since the end of 2014 but i am now getting sharp pains down below and also i have had burning tongue and lips. I didn't have pain in these places when i had the all over burning. It was everywhere else. However i had always had buzzing all over my body.

My last appointment with my neuro went well, he suggested that i may have had some sort of Virus which attacked all the nerves in one go, and the pain i get from time to time is just old nerve damage . He mentioned possible Sensory Guillian Barre.

I'm in the UK and have been offered a trial of IVIG, i have tried 5 days of iv steroids last year which didn't seem to make any different to the the symptoms . My next appointment is not until October. I am wondering what to do, as my biopsy was unusual and my symptoms are strange, as the full body burning has gone away but i seem to get pain in places i never had before. Any ideas?

I am wondering if i should go for the IVIG......

[MAT52]

Originally Posted by LouLou1978

Hello there,

For those of you who don't know my story, i have had symptoms of SFN from the end of 2012. I was 36 at the time, symptoms (not painful) but buzzing and funny feelings. Fast forward to 2014 when i saw a really good neuro who suggested this could be Non length dependent SFN. He sent me to London for a skin biopsy. The skin biopsy revealed increased nerve fibers, (which I have been told is very unusual). Neuro told me 80% of SFN suffers have reduced nerve fibers. He only sees about 20% with this presentation. It was indicated in the professor's letter who done the skin biopsy this was inflammation.


While i was completely stressed out about being told i had SFN within days the pain was horrific all over my body. My scalp was the worst. After a couple of months the pain subsided, I calmed down a bit and pain almost went away. I have been in this position since the end of 2014 but i am now getting sharp pains down below and also i have had burning tongue and lips. I didn't have pain in these places when i had the all over burning. It was everywhere else. However i had always had buzzing all over my body.

My last appointment with my neuro went well, he suggested that i may have had some sort of Virus which attacked all the nerves in one go, and the pain i get from time to time is just old nerve damage . He mentioned possible Sensory Guillian Barre.

I'm in the UK and have been offered a trial of IVIG, i have tried 5 days of iv steroids last year which didn't seem to make any different to the the symptoms . My next appointment is not until October. I am wondering what to do, as my biopsy was unusual and my symptoms are strange, as the full body burning has gone away but i seem to get pain in places i never had before. Any ideas?

I am wondering if i should go for the IVIG......

Hi LouLou. I haven't had the proper biopsy for SFN - just a rather homemade one taken by my island GP last year and sent off to Edinburgh - showed nothing at all - but whether GP conducted punch biopsy from the right part of my calf I really don't know!

The only things that have appeared for me have been raised to high levels of inflammation in my blood and same from spinal fluid in the form of paired oligloconal bands. Recently my ANA was found to be a clear positive and elevated IgG and IgA as well as elevated Red Blood Cells (my normal). This is why I'm hoping that the lip biopsy shows up positive for Sjogrens as it would explain a lot and perhaps lead to further treatment options. However my mouth and eyes aren't especially dry so I'm not expecting too much from the results.

If I was offered IViG I'd most definitely try it. I've asked my previous neuro several times but been told that my SFN has not been confirmed as immune mediated. If your results show that yours had I really would grab the treatment option myself.

I too have the burning gums and lips - the most annoying aspect of SFN because it's oral and therefore affects our lives adversely day in day out. My sister has it too but hers is in the roof of her mouth and tongue. She's had it for two years - along with very bad back - but is none the wiser.

[LouLou1978]

Originally Posted by MAT52

Hi LouLou. I haven't had the proper biopsy for SFN - just a rather homemade one taken by my island GP last year and sent off to Edinburgh - showed nothing at all - but whether GP conducted punch biopsy from the right part of my calf I really don't know!

The only things that have appeared for me have been raised to high levels of inflammation in my blood and same from spinal fluid in the form of paired oligloconal bands. Recently my ANA was found to be a clear positive and elevated IgG and IgA as well as elevated Red Blood Cells (my normal). This is why I'm hoping that the lip biopsy shows up positive for Sjogrens as it would explain a lot and perhaps lead to further treatment options. However my mouth and eyes aren't especially dry so I'm not expecting too much from the results.

If I was offered IViG I'd most definitely try it. I've asked my previous neuro several times but been told that my SFN has not been confirmed as immune mediated. If your results show that yours had I really would grab the treatment option myself.

I too have the burning gums and lips - the most annoying aspect of SFN because it's oral and therefore affects our lives adversely day in day out. My sister has it too but hers is in the roof of her mouth and tongue. She's had it for two years - along with very bad back - but is none the wiser.

My tests have all come back normal. Nothing to show it was immune mediated. My neuro says nld sfn is an inflammatory neuropathy. He is very clever and got my trial of ivig agreed through the panel. He also got another lady on this site ivig. Her previous neuro would not entertain it. Mat have you thought about being referred to London and see the professor there who specialises in sfn and skin biopsies. Would it be worth having it done again?

[MAT52]

Originally Posted by LouLou1978

My tests have all come back normal. Nothing to show it was immune mediated. My neuro says nld sfn is an inflammatory neuropathy. He is very clever and got my trial of ivig agreed through the panel. He also got another lady on this site ivig. Her previous neuro would not entertain it. Mat have you thought about being referred to London and see the professor there who specialises in sfn and skin biopsies. Would it be worth having it done again?

Definitely I will ask if this new hospital can't help. It's a big teaching hospital and I've yet to see the rheumatology consultant but I am really sick of being passed about from neurology to rheumatology (and also endocrinology next month). If the Sjogren's test is negative then I plan to ask the neurologist about getting a second opinion. Does the fact that it started in my feet and now affects arms and legs and mouth mean NLD or LD SFN please? I'm from London originally and I might suggest that I pay for my own travel and accommodation if they will refer me. I am fairly sure that the neurologist here won't agree as she was pretty dismissive but the rheumatologist and oral consultant seem fairly on the ball. Thanks for your helpful suggestion. Great to find someone in UK who can advise and explain more.

[LouLou1978]

Originally Posted by MAT52

Definitely I will ask if this new hospital can't help. It's a big teaching hospital and I've yet to see the rheumatology consultant but I am really sick of being passed about from neurology to rheumatology (and also endocrinology next month). If the Sjogren's test is negative then I plan to ask the neurologist about getting a second opinion. Does the fact that it started in my feet and now affects arms and legs and mouth mean NLD or LD SFN please? I'm from London originally and I might suggest that I pay for my own travel and accommodation if they will refer me. I am fairly sure that the neurologist here won't agree as she was pretty dismissive but the rheumatologist and oral consultant seem fairly on the ball. Thanks for your helpful suggestion. Great to find someone in UK who can advise and explain more.

Hi Mat - Sorry for the late reply. I am no expert but i thought that if you had it in your mouth, arms and legs it would be NLD SFN. I think most good neuros class this presentation as an inflammatory neuropathy. This presentation has been enough to get IVIG, however my Skin biopsy was unusual as it showed increased fibers, which the professor felt was in keeping with an inflammatory process. I am thinking if you got it done in London, they can then compare your biopsy to others. They can then look at all your other issues and may recommend ivig. I think you are right, if you don't get anywhere with these dr's then if you can get there, it may be worth a visit. Good Luck and keep us posted.

[MAT52]

Originally Posted by LouLou1978

Hi Mat - Sorry for the late reply. I am no expert but i thought that if you had it in your mouth, arms and legs it would be NLD SFN. I think most good neuros class this presentation as an inflammatory neuropathy. This presentation has been enough to get IVIG, however my Skin biopsy was unusual as it showed increased fibers, which the professor felt was in keeping with an inflammatory process. I am thinking if you got it done in London, they can then compare your biopsy to others. They can then look at all your other issues and may recommend ivig. I think you are right, if you don't get anywhere with these dr's then if you can get there, it may be worth a visit. Good Luck and keep us posted.

Thanks Loulou this is really helpful. However I'm fairly sure that a London doctor wouldn't be able to sort out IViG for me up here in Scotland. I am about to post about the immune mediated thing but very interesting to know what your neuro thinks about NLD SFN and the immune aspects of it. Mat x

[Healthgirl]

Originally Posted by MAT52

Hi LouLou. I haven't had the proper biopsy for SFN - just a rather homemade one taken by my island GP last year and sent off to Edinburgh - showed nothing at all - but whether GP conducted punch biopsy from the right part of my calf I really don't know!

The only things that have appeared for me have been raised to high levels of inflammation in my blood and same from spinal fluid in the form of paired oligloconal bands. Recently my ANA was found to be a clear positive and elevated IgG and IgA as well as elevated Red Blood Cells (my normal). This is why I'm hoping that the lip biopsy shows up positive for Sjogrens as it would explain a lot and perhaps lead to further treatment options. However my mouth and eyes aren't especially dry so I'm not expecting too much from the results.

If I was offered IViG I'd most definitely try it. I've asked my previous neuro several times but been told that my SFN has not been confirmed as immune mediated. If your results show that yours had I really would grab the treatment option myself.

I too have the burning gums and lips - the most annoying aspect of SFN because it's oral and therefore affects our lives adversely day in day out. My sister has it too but hers is in the roof of her mouth and tongue. She's had it for two years - along with very bad back - but is none the wiser.

Would you mind explaining what the lip burning feels like? Is it directly on the lips? Does it feel like they are windburned? Do you feel like you need to lick them?

[MAT52]

Originally Posted by Healthgirl

Would you mind explaining what the lip burning feels like? Is it directly on the lips? Does it feel like they are windburned? Do you feel like you need to lick them?

Well it feels as if they are wind burned yes and I do lick a lot - especially since my lip biopsy. But my gums are the most annoying/ distressing because they feel as if they are swollen and my top teeth and nostrils feel as if I'm wearing an upper jaw brace that's just been tightened at the front. It's very weird! Sometimes it feels as if I've eaten a mouth full of stinging nettles - same for hands and feet - but more hands and finger tips. When I have flares it feels like the whole of my peripheries and mouth has been dipped in sulphuric acid but most of the time it's just space dust/ paprika! Hope this helps?

[mrsD]

Originally Posted by MAT52

Well it feels as if they are wind burned yes and I do lick a lot - especially since my lip biopsy. But my gums are the most annoying/ distressing because they feel as if they are swollen and my top teeth and nostrils feel as if I'm wearing an upper jaw brace that's just been tightened at the front. It's very weird! Sometimes it feels as if I've eaten a mouth full of stinging nettles - same for hands and feet - but more hands and finger tips. When I have flares it feels like the whole of my peripheries and mouth has been dipped in sulphuric acid but most of the time it's just space dust/ paprika! Hope this helps?

persistent mouth pain, gum and lip issues might signal a deficiency of biotin:

Biotin Deficiency Can Be Fatal | Suzy Cohen, RPh

dose would be 7 to 10mg a day. Already the MS community is discussing new information for high dose biotin for themselves, and their doses are even much higher.

[Healthgirl]

Originally Posted by LouLou1978

Hello there,

For those of you who don't know my story, i have had symptoms of SFN from the end of 2012. I was 36 at the time, symptoms (not painful) but buzzing and funny feelings. Fast forward to 2014 when i saw a really good neuro who suggested this could be Non length dependent SFN. He sent me to London for a skin biopsy. The skin biopsy revealed increased nerve fibers, (which I have been told is very unusual). Neuro told me 80% of SFN suffers have reduced nerve fibers. He only sees about 20% with this presentation. It was indicated in the professor's letter who done the skin biopsy this was inflammation.


While i was completely stressed out about being told i had SFN within days the pain was horrific all over my body. My scalp was the worst. After a couple of months the pain subsided, I calmed down a bit and pain almost went away. I have been in this position since the end of 2014 but i am now getting sharp pains down below and also i have had burning tongue and lips. I didn't have pain in these places when i had the all over burning. It was everywhere else. However i had always had buzzing all over my body.

My last appointment with my neuro went well, he suggested that i may have had some sort of Virus which attacked all the nerves in one go, and the pain i get from time to time is just old nerve damage . He mentioned possible Sensory Guillian Barre.

I'm in the UK and have been offered a trial of IVIG, i have tried 5 days of iv steroids last year which didn't seem to make any different to the the symptoms . My next appointment is not until October. I am wondering what to do, as my biopsy was unusual and my symptoms are strange, as the full body burning has gone away but i seem to get pain in places i never had before. Any ideas?

I am wondering if i should go for the IVIG......

There was a point that I would have said yes to IVIG in a second and was very angry that not one of my doctors would try it for me. I have full body neuropathy and high ANA, they even all suspect its autoimmune, but can't figure out what, so say sjogrens because my eyes are so dry and my lip biopsy came up borderline.
Anyway, being that I am able to function (things are far from easy), I've stopped thinking about it. I'm also on a Facebook group where some people report that the side effects were too much to handle. There are people it helps, but I don't hear people raving about it. On the other hand it seems that when some people find the right meds, they are quite improved, claiming they couldn't live without them. I know that's not an answer, and I have not found anything to solve my problems either.

I would try it if it my pain was requiring me to take narcotics all day though.