So got told I have SNF a week ago, neuro had previously said I have objective neuro signs positive hoffman and romberg tests, brisk reflexes,that was back in dec 13. All blood tests nerve tests and MRI since then are normal. Hence the SNF diagnosis, I have had no tests of any type since dec. my symptoms started in my right arm dull aching pins and needles spreading hen to left arm, face then feet and now also legs and areas on torso.
The tingly face is v annoying and is now effecting my eyelid which feels like it's not opening properly is this common with SFN ?
My neuro offered no advice or information I fact he clearly wasn't interested after he told me it was nothing nasty like MS just SFN.

So do I try and get some repeat/ more tests or accept this diagnosis, I can see I have many SFN symptoms all be it not a typical feet first presentation, but I just aren't quite happy with him not looking further at a cause or in fact doing a skin biopsy to prove its is in fact SFN. He did not like me trying to question him at all :/

Sorry for all the questions

It sounds like the issue with your eyelid is Horner's Syndome.....if you find that eyes pupil does not dilate like the other eye and if you also find that you do not sweat on the side of your face where the eyelid is drooping, that is possible Horner's. I was told that it does not have long term adverse affects but shows there is nerve damage that affects that part of your face/eye.

Hey Billylyne

I am so sorry for what you are going through and know exactly what you are talking about physically and dr wise. My SFN hit me with a bang one month after my chemo ended. My PCP ran a battery of tests and even had me visit a neurosurgeon to review the MRI of my back and neck. Even though there are problems with my back and neck it was nothing that would cause my symptoms. I then went to a foot and ankle dr who was fairly sure it was SFN. He sent me to a neuro who increased my gaba from what my PCP had started me on and said idiopathic, which is a word I'm not fond of. Still no definite dx. I am one of those types of people that have to have things in black and white.....I researched SFN and then called and asked the foot and ankle dr if he could do the skin biopsy and he agreed. Results said I had severe small fiber neuropathy with 0 and 0.06 on my 2 skin punches.....the scale at Bako Labs is 0 to 15. I cried when he told me....not because it was so bad but because I was so very relieved to know what it was.

During all this I was going for my 3 month cancer check up with my oncologist. He absolutely just brushed me off....when I stopped to see the chemo nurses they said they were not surprised at all. The does of carbo/taxol I was given were pretty high per them. I have since changed cancer dr's.

Everyone is different. I've read of other people with SFN that started in hands, upper legs and places other than the feet. Mine did start in the feet....I'm now having deep aching in both legs and upper right arm. My teeth bother me on and off and also my jaws...usually one at a time. My feet are the worse.

I had to be my own healthcare advocate during this until, of all people, my GYN dr came to the rescue. She was furious that onco had not tried to help me since it was evident the chemo drugs set this into motion.

Hope my story helps some...there will be others behind me giving their suggestions.

Please keep us posted on how you're doing.

Debi from Georgia

Hi Billyline.
I am sorry you have these symptoms.
I think the first thing you should do is to find a good neuromuscular neurologist that is a specialist in neuropathy. Any doctor that says" it is nothing serious, just SFN" is not worth your business.
SFN can be caused by a variety of , yes, serious, complicated and often cronic conditions/diseases.
So you should find a doctor that takes your interest and find the underlying condition.

You should ask the neurologist to have a skin punchbiopsy done. This is the standard to diagnose SFN

And, yes, SFN can be very difficult, painful, debilitating to live with.

Also one more question, you mentioned eyelid. Do you have dry eyes, dry mouth? Do you have joint pain?
These symptoms in addition to your SFN can be some autoimmune disorders that your neurologist caninvestigate and perhaps refer you to a rheumatologist.


Debi,
you mentioned your SFN symptoms in teeth. Do you get numbness in your gums? I do. Sometimes it feels like there is pain deep inside. My upper gums feel like frozen with numbness. It makes me worry that there is not enough blood supply, or perhaps just the numbness from small fiber damage.?? what is your opinion? ( if you have this symptom)
All the best
Synnove

Debi,
you mentioned your SFN symptoms in teeth. Do you get numbness in your gums? I do. Sometimes it feels like there is pain deep inside. My upper gums feel like frozen with numbness. It makes me worry that there is not enough blood supply, or perhaps just the numbness from small fiber damage.?? what is your opinion? ( if you have this symptom)
All the best
Synnove[/QUOTE]


Synnove,

No I don't have numbness in my gums but the deep aching in my bottom jaws. My teeth have been hurting on and off...I mean all my teeth at one time. Yesterday was the first time they hurt when I was trying to eat. I do experience numbness of the tongue again on and off.....I also did this during chemo treatments.

I wish I could be more helpful...you probably need to ask your dr about it. Please let me know.

Debi