Just Diagnosed with Small Fiber Neuropathy

Hi, @lauraj155 - Just wanted to let you know I moved your discussion and combined it with an existing discussion in the Neuropathy group "Just Diagnosed with Small Fiber Neuropathy." This was to get you in discussion with some members who have small fiber neuropathy and see if others may have experienced fasciculations (twitching) with their disease and why this might be occurring with small fiber neuropathy. Hoping that @jakedduck1 @johnbishop @albiet @rwinney @pepperbeau might return to offer any insights on this.

Have you looked at getting another opinion about the cause of the fasciculations? Will you be undergoing treatment for these?

Hi @lauraj155 -- I'm not familiar with fasciculations but I can imagine that it's disconcerting if it's painful. I did find a little information that may be helpful but I'm not sure.

Another Perspective on Fasciculations: When is it not Caused by the Classic form of Amyotrophic Lateral Sclerosis or Progressive Spinal Atrophy?
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192433/

Is it possible as @lisalucier mentioned to get a second opinion if your neurologist does not know what is causing it? Maybe they can provide a referral?

@johnbishop, @lisalucier - Thank you for responding to my question. I have been extremely frustrated with the level of care that I have received from the Neurologist. I cannot find anything about fasciculations with small fiber neuropathy. I have it mainly in my left foot and big toe where most of the nerve pain is. I can barely walk due to the pain, however my EMG appears normal and still waiting on small fiber results. Yes, I will probably have to seek a Neurologist out of network for a second opinion. I appreciate your help. -Laura

Hi I am basically on the verge of being diagnosed... is your life managable with SFN? How long have you had it? Can you maintain some resemblence of a normal life sometime after onset of symptoms I am petrified?

Hello @reecey, welcome to Connect. I can certianly understand your being scared by the diagnosis. I have had small fiber peripheral neuropathy for well over 20 years and still have a somewhat normal life for an old guy. The more you learn about your condtion, the better chances are that you will find something that will help you. Connect members are a great resource for you. Here are a few other discussions you may want to read through to learn what others have shared and what has helped them.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

> Groups > Neuropathy > Small Fiber Neuropathy?
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

@reecey you mentioned you are on the verge of being diagnosed. Are you able to share a little more about your symptoms?

Hi, @reecey - I wanted to add my welcome to Mayo Clinic Connect and also invite @lauraj155 @boo55 @pepperbeau @albiet @rwinney to come greet you and offer any support and thoughts related to your concerns about the manageability of small fiber neuropathy.

Hello and welcome. May I ask how and when will you be finding out your diagnosis? Before I jump in with two feet for you I would like to understand a bit more...if you are willing to share. You ask great questions and came to the right place for support, knowledge and encouragement.
Rachel

I have had diagnosis of fibromyalgia since 2003.
Lots of other health diagnoses with chronic pain.
Last January both of my feet began to go numb with nerve pain after a nine day hospital stay with critical low sodium. Rheumatoid arthritis doctor sent me for punch biopsy of both feet. My lab
Pathology returned a diagnosis of small fiber
Polyneuropathy. My small nerves in both feet are dying as it also travels up both legs. In research I read it can affect the autonomic nervous system. I have all the symptoms heart arrhythmia’s, sluggish bowel,Retention post urine ect. Awaiting an appointment that I made 4 months ago to see
A neurologist that has a reputation for helping
With symptoms of problems that have not been
Researched or known a lot about. In my research
It saids the underlying problem is what causes
The symptoms. I am desperately trying to have
A doctor diagnosis my problem so maybe I can get pain relief and understand more. Does anyone else on site have these symptoms or have had a punch biopsy with this diagnosis?
How are you coping? I Am very interested in your
Case and opinion. Thanks for taking the time to read.

Hello @pieface1971. I moved your discussion and combined it with an existing discussion titled, "Just diagnosed with small fiber neuropathy." I did this so you could read through some of the members' previous experiences with receiving a diagnosis of SFN and so the members discussing it would see your post as well. If you are responding by email, you can click on VIEW & REPLY to be brought to the new discussion. As you work through some of your new symptoms and diagnosis, there is another active discussion on Connect about how to manage the pain with small fiber neuropathy. You can check that one out here, https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/.

I'd like to invite @boo55 @lauraj155 @lavieauxusa1972 @albiet @peggyn @lorirenee1 to share whether they can relate to any of the symptoms you mentioned you were having, @pieface1971:
- small nerves in both feet are dying as it also travels up both legs
- heart arrhythmias
- sluggish bowel
- retention post urine

They may also have some tips from their own experiences of how they have coped with their symptoms.

@reecey also mentioned being on the verge of being diagnosed with small fiber neuropathy. Do you now have a diagnosis, reecey?