Got my results back today. Both punches were positive. I'm going out of my mind right now. I can't figure out how I'm going to live. What am I going to look like in 5 years? Will I able to walk? Talk? Go to the bathroom? What happens to people with sfn? I don't even remember what the doc said. It was my pcp cud my neuro is away until end of June. He couldn't tell me much, said the neuro needs to look at it. I asked if he was positive about the results he said yes.

Please, some responses here. What does severe sfn look like 5 years from now?

Hopefully Debi will see your post. Her profile is under St George 2013. She has sfn for the past few years. I believe she is currently under Pain Care Management.


Gerry

ah heck CG I am sorry to hear that. I know you have been looking for answers for so long and yet it doesn't feel like the hoped for relief when finally getting them. I can't answer your question since I belong to the CRPS club but I wanted to reach out with a Kleenex and a hug. I hope this at least gives some direction to your treatment and allows you to move forward to the dealing with it phase and out of the "what the heck is it" phase.

Sending extra Healing Love, Littlepaw

No one can tell you what it will look like. Many people have relatively slow progress. Debi (St. George) and I have similar biopsy results and are on pain management with pretty strong drugs, I am on MS Contin, she was on BuTrans patches last I heard. We have different causes for our SFN, mine is hereditary, but our biopsies revealed no nerve fibers at lower leg, so about as bad as it can be. My biopsy at upper thigh showed the fibers breaking down, that was five years ago.

Did your doctor give you an indication of the actual results? Were the nerve fibers reduced or totally absent?

This has been a lifelong process for me, although the numbness started in my toes about 20 years ago. I have had leg pain for as long as I can remember, gradually getting worse. I have used a hiking pole to help me walk for the past 5 years, now I use a wheelchair occasionally, especially if I will have to stand for any length of time. I still go for walks, but am weakening. Steps and inclines are very difficult and I am getting AFO's, ankle foot orthotics with bracing to help with dragging my toes and ankle weakness.

It has taken me a long time to get this bad, with age (I am 53) the deterioration seems to have sped up. I was pretty strong for a long time. I would concentrate on keeping as healthy as possible, using what muscles you can, even if it requires pain medication to exercise it is worth it. Do not focus on the long term unless you absolutely have to, if moving in the future, for example, one floor might be prudent. Same with job opportunities. But don't live with "what ifs?" unnecessarily. No one can predict the progress of this disease.

Do you feel any sense of relief at having your symptoms confirmed? I know that was huge for me even though it was a severe diagnosis.

I'm oddly still in denial...my Dr gave me numbers but I don't remember. All I know is that Dr said I just fell in range of abnormal. He didn't Indicate condition of fibers.

I just had a small inkling of hope that this was anxiety like all the Drs said and I feel like I've just been hit by a train. Handed a life sentence of misery that will only get worse. Everything I've read says it gets worse. I'm this bad and it only took a year to get here. what will I be like next year?

--is that people with predominanatly small fiber neuropathy, which affects the sensory nerves that subsume the sensations of pain and temperature and many autonomic functions, do not typically progress to severe motor symptoms, as I did not, though my sensory symptoms, like many with small fiber problems, were severe. Mine involved a very acute onset, though (hours!) which is not typcial; people with acute onset neuropathies tend to have more of a chanced at recovery, though said recovery is often patchy and incomplete.

In short, people with small fiber neuropathy seldom progress to major motor symptoms, though the sensory symptoms, and sometimes the autonomic symptoms, can be quite debilitating without good management. The key is to keep monitoring, get symptoms relief however one can, and not to give up on finding doctors who will work towards diagnosis of cause; while many painful small-fiber neuropathies get labelled idiopathic there are probably fewer such cases than there should be, as only specialists really familiar with neuropathy look for more obscure etiologies, ranging from novel anti-nerve autoimmunities to odd toxicities to hereditary syndromes to borderline metabolice dysregulation.

Thanks glentaj. How long did your recovery take? It's been a year for me and the pain and sensations are getting worse.
Also, did u have body wide twitching? I have such bad twitching I feel as though I must have motor nerve involvement. My legs are tightening and cramping a lot. My EMg was a while ago and I fear that since they only tested one leg from calf down that they didn't catch it ( maybe too early). Is it possible to have non stop twitching and cramping and have no motor involement?

Another thing... To have a positive biopsy u must have below 5th percentile. How is it possible to reach normal numbers ( heal) when it's that bad? How long is too long without recovery? Am I a lost cause at this point because there's no improvement ?

Sorry for your diagnosis,CG.

I am SFN only. I have a very good neuro, and I had similar fears as you did. Mine also started acutely and was full body. The course is really different for everyone. I have a lot of twitching and some cramping, but no actual large fiber or motor involvement. My neuro says twitching and cramping can be very common with SFN. The twitching and cramping fluctuates, just like all of my other SFN symptoms.

My neuro also made it clear that it is pretty uncommon for neuropathies that start off as small fiber sensory to progress to motor neuropathies...so just echoing was Glenn has said.

I was very overwhelmed and terrified when I was diagnosed. I too was hoping I was just wacky in the head, so when the doctor told me my biopsies at thi and ankle were both positive, I was very distraught. My anxiety went through the roof, and along with it so did my pain. I have come to terms with the fact that for me, stress and anxiety WILL increase my pain and symptoms, so I try to be proactive and optimistic (not always possible of course haha).

This is exactly how I felt. Never will I forget the way the doctor told me, "You have neuropathy and will need pain medications to manage it, there is nothing we can do.I found out in a parking lot and felt the world crashing down. You are not alone.