Small Fiber Neuropathy?

Unfortunately I do not . Again would love anyone in nyc to recommend

Not for nothing but I was the reverse of you!

Started with chronic pain in neck and head. Numbness from shoulder down arm.
No basic treatments or techniques helped. 3 spine surgeons all said no surgery. PCP never understood why with only 2 bulging and 1 herniated cervical disc I was in so much pain.

On to Pain Management for occipital and cervical nerve blocks then radio frequency ablations for 2 years. PM could not understand why I continued to have such burning through my shoulders. I felt aged beyond my 46 years and decrepit.

Neurologist #1 failed to diagnose chronic migraine during all this as he was focused on my neck problems. That too was haunting me.

I passed EMG/Nerve Conduction studies. Ruled out Fibromyalgia with a Rheumatologist. My strength was never an issue. Hmmm...PCP said let's try Cymbalta (my anxiety and patience were thru the roof). Then, let's try gaba, then Lyrica.

I finally said screw Neurologist #1 and found a new one referred by PM who properly diagnosed me with chronic migraine and could not believe no-one else had!!

2 and 1/2 years passed now and more pieces of my body began to act corrupt. I got a weeding injury to my hand. Yes, as in pulling weeds!! I got a walking injury. Yes, God forbid I took a slow calming walk for my migraines. Went to Orthopedic Dr. and xrays were fine, they put me in splint and walking boot.

It progressed to palpitations, out of breath, exhaustion, dizziness, sweats, tingles, zaps, vibrations, sun burn sensations, stabbing pains, weakness etc... Pain, pain, pain.

I went to neurologist #2 and said...IM GOING CRAZY, SOMETHING IS WRONG WITH ME NEUROLOGICALLY AND IF YOU DONT FIGURE IT OUT IM GOING TO MAYO CLINIC!!!!

And FINALLY a skin biopsy was done and SFN was diagnosed with a B12 deficiency. A day late and a dollar short.

Mind you, most of the trouble shooting was my doing. Advocate for your self. You aren't crazy and if you were diagnosed with SFN 10 years ago and it may be acting up now then that's a decent stretch for you but don't rule it out, it can cause havoc.

It's hard and I live in NY but not NYC. Must be tougher with so many Dr choices. I don't see why you don't have the right for a biopsy test again unless insurance denied. I hope you can find the help you need soon. Don't settle.

My confusion with SFN is navigating it's wrath verses knowing if something new presents itself. Confusing!
I will attach a statement from the book my Nurologist helped to write on SFN which concludes possible confusions.

I wish you well.
Rachel

Not for nothing but I was the reverse of you!

Started with chronic pain in neck and head. Numbness from shoulder down arm.
No basic treatments or techniques helped. 3 spine surgeons all said no surgery. PCP never understood why with only 2 bulging and 1 herniated cervical disc I was in so much pain.

On to Pain Management for occipital and cervical nerve blocks then radio frequency ablations for 2 years. PM could not understand why I continued to have such burning through my shoulders. I felt aged beyond my 46 years and decrepit.

Neurologist #1 failed to diagnose chronic migraine during all this as he was focused on my neck problems. That too was haunting me.

I passed EMG/Nerve Conduction studies. Ruled out Fibromyalgia with a Rheumatologist. My strength was never an issue. Hmmm...PCP said let's try Cymbalta (my anxiety and patience were thru the roof). Then, let's try gaba, then Lyrica.

I finally said screw Neurologist #1 and found a new one referred by PM who properly diagnosed me with chronic migraine and could not believe no-one else had!!

2 and 1/2 years passed now and more pieces of my body began to act corrupt. I got a weeding injury to my hand. Yes, as in pulling weeds!! I got a walking injury. Yes, God forbid I took a slow calming walk for my migraines. Went to Orthopedic Dr. and xrays were fine, they put me in splint and walking boot.

It progressed to palpitations, out of breath, exhaustion, dizziness, sweats, tingles, zaps, vibrations, sun burn sensations, stabbing pains, weakness etc... Pain, pain, pain.

I went to neurologist #2 and said...IM GOING CRAZY, SOMETHING IS WRONG WITH ME NEUROLOGICALLY AND IF YOU DONT FIGURE IT OUT IM GOING TO MAYO CLINIC!!!!

And FINALLY a skin biopsy was done and SFN was diagnosed with a B12 deficiency. A day late and a dollar short.

Mind you, most of the trouble shooting was my doing. Advocate for your self. You aren't crazy and if you were diagnosed with SFN 10 years ago and it may be acting up now then that's a decent stretch for you but don't rule it out, it can cause havoc.

It's hard and I live in NY but not NYC. Must be tougher with so many Dr choices. I don't see why you don't have the right for a biopsy test again unless insurance denied. I hope you can find the help you need soon. Don't settle.

My confusion with SFN is navigating it's wrath verses knowing if something new presents itself. Confusing!
I will attach a statement from the book my Nurologist helped to write on SFN which concludes possible confusions.

I wish you well.
Rachel

I didn't know the Neurologist I was referred to, but I was able to read other patient reviews before I went to the appointment. Based on what I read it was clear some thought he did not have a great bedside manner, and he is very direct (which I like). It seemed to me that the people who really did NOT like him (and there were a number) did not hear what they wanted or expected to hear. Thankfully I had no pre-conceived ideas about what might be going on, so I was pretty open.

I was very comfortable with his approach. He certainly wasn't warm - but he wasn't cold either - just direct. He provided the information I needed (including a handout), and he answered my questions. I found him to be professional, and would recommend him if asked.

Perhaps you could look up the names of Neurologists in your area and do some online research to find someone you think you may gel with?

I am so happy you figured out what was wrong? Are you pain free after finding that the b12 was low? I unfortunately had most tests again but not sure why they didn’t do the biopsy over? Would doing the biopsy over mean anything?

I guess once things get ruled out based on hard core evidence of Xray, CT, MRI, blood tests...then SFN is the go to.

I didn't know the Neurologist I was referred to, but I was able to read other patient reviews before I went to the appointment. Based on what I read it was clear some thought he did not have a great bedside manner, and he is very direct (which I like). It seemed to me that the people who really did NOT like him (and there were a number) did not hear what they wanted or expected to hear. Thankfully I had no pre-conceived ideas about what might be going on, so I was pretty open.

I was very comfortable with his approach. He certainly wasn't warm - but he wasn't cold either - just direct. He provided the information I needed (including a handout), and he answered my questions. I found him to be professional, and would recommend him if asked.

Perhaps you could look up the names of Neurologists in your area and do some online research to find someone you think you may gel with?

Heck no! However, the specific deficiency symptoms have subsided. Palpitations, breathing, dizzy, etc... they are mild and few and far between. The nerve damage had been done already though.

@rwhinney thank you for that. Can I ask what the list of symptoms are that they refer to?

Same scenario with me and my neuro! Are you sure your Dr isn't Charles Argoff?! Wow!