Its just been two weeks, could this be Small fiber neuropathy?

Hello @italapino, Welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy. Some of your symptoms sound like small fiber neuropathy but I have no medical training or background and cannot give any advice on diagnosing conditions other than sharing my own personal experience. I'm glad to see you have already have an upcoming appointment at the Mayo Clinic Arizona Campus for a second opinion where you will be in good hands for coming up with a diagnosis and treatment plan. Mayo Clinic is very good at diagnosing and treating difficult to diagnose health conditions.

There is another active discussion on small fiber neuropathy where your post will have more visibility. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion so other members with small fiber neuropathy will see your post and be able to share their diagnosis and treatment.

Groups > Neuropathy > Small Fiber Neuropathy
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/

In my personal experience with small fiber peripheral neuropathy, it started in the toes of both feet and progressed over the past 20+ years to the lower part of both legs when I decided to have it diagnosed in 2016. There wasn't an urgency on my part because I didn't have any pain. I only had the tingling and numbness symptoms. I'm really glad that you are taking the steps early to get a diagnosis and treatment plan.

@roch shared some great tips here on how to get off to a a best start with a new specialist in another discussion that may help you prepare for your upcoming Mayo appointment:
-- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

I thought this link to Becoming a Patient at Mayo Clinic's Campus in Arizona might also be helpful:
-- https://www.mayoclinic.org/patient-visitor-guide/arizona/becoming-a-patient

Can you share an update with us on your diagnosis after your Mayo appointment?

Thank you so much for all this information! Yes I will update upon diagnosis and visit after Mayo

Hi @italapino. Welcome to Mayo Clinic Connect. I am relatively new here and have found this to be a wonderful place. You can read about other members experiences and informative links are posted all over this site. The members are very kind, helpful and caring. You will gain a lot of knowledge and it really does help to share and give members your support, as well.

I was diagnosed with severe SFN in 2015. My symptoms at that time were: pins/needles feeling in my hands, arms, feet and legs. (In 2011 I was diagnosed with Sciatica and Piriformis Syndrome - so, I knew what nerve pain felt like and how it travels). I would also get numbness in my fingers and forearms. What sparked my PM doctor to perform a Punch Biopsy for SFN, was an unusual symptom I had been noticing in addition to what I have mentioned - a change in the scent of my perspiration. It was really odd to me, as I had not changed my diet. The biopsies were sent out to Corinthian Laboratories and I received confirmation of severe SFN. (My Neurologist is who made my diagnosis - I had not seen a Neurologist prior to this time).

Since 2015, my SFN has progressed into more burning, stinging, numbness, skin sensitivity, etc. Sometimes it will get progressively worse, in other areas it stays the same.

I am a patient at the Mayo Clinic in AZ where you will be going. Like John said, the Physicians are excellent. You will really like them. I will be looking for your post on SFN. I wish you the best and days of less pain and discomfort.

(I haven't been able to post as much as I would like to, due to the rainy weather we have had here for over 2 weeks. I hope to post more real soon).

TeeTee

Hi @italapino. I forgot to share that in 2017, I suddenly got hit with syncope (feeling faint, dizzy and actually fainting to the ground), loud locust sounds in both ears, balance issues, dry eyes, urinary problems and a few other weird symptoms. I wasn't sure if this was SFN related or something different.

The Mayo Clinic will help get to the bottom of what is going on with you. I am sorry to hear about the Neurologist not ordering tests to be done, with the symptoms you presented.

Thank you! yes, I am very much anticipating this appointment. Thankfully its local and heard they are really great.

Hrm.. Given that I too had balance, dizzyness, and tinnitus just weeks before this started, I wonder if it is correlated. Thank you for sharing that.

I have nerve damage in my ears, which causes tinnitus and hearing loss, nerve damage in my moisture producing system which causes dry eyes and dry mouth, peripheral neuropathy which causes balance issues, Small Fiber Neuropathy, and gastrointestinal neuropathy, and nerve damage in my bladder which causes inflammation (Interstitial Cystitis). All of this nerve damage is the result of my Immune System attacking the organs/systems of my body (primarily nerves).

Everything is connected, all of my problems are caused by my Immune System, which has gone amok.

Best wishes teetee7.

Regards, ElaineD

Thank you @elained . I apologize for missing your reply.

I've been having a very rough 3 weeks with my Autonomic Dysfunction, severe SFN, chronic pain and as you know (unfortunately) the list just goes on and on.

The Weather - has really riled things up - first time I have noticed the weather affecting my Autonomic Dysfunction. It definitely plays a huge role.

My Thermoregulatory System - is VERY out of whack. I have been having terrible bouts of sweating now 24/7. I have been trying to get in to see my Neurologist, but I have felt too sick.

My Neurologist started me on Midodrine and Fludocortizone for my Orthostatic Hypotension and it does help, but I still get syncope episodes every day. I haven't fallen recently, thank goodness, but have come very close. It scares me because I have 4 compression fractures (T5, T6, T7, T8) which all have over 50% loss of height and my discs in-between are all dehydrated. (My Neurosurgeon will not operate on them due to how high risk the surgery is and the success rate isn't good at all).

My skin - on both hands have red blotches on all my fingers and on the top of both. I have a lot of numbness, tingling, nerve pain in them. Both arms have nerve pain but lately it's been mostly deep muscle and joint pain.

My bladder is having more spasms and tenderness. I am nauseous a lot. I literally could lay here and type for an hour on all that's going on, lol. It's crazy!

I have decided to go ahead with getting my first Ketamine infusion. It has been recommended for a while by my pain management doctor and my Neurologist gave me the go-ahead on trying these infusions. I have been using Ketamine nasal spray for 2 years now (it has to be compounded at an apothecary) and it does help to take the edge off migraines sometimes and nerve pain. It's been hard to find people who have undergone Ketamine infusions for chronic pain.

If anyone has any experience or knowledge with Ketamine infusions, I would love to hear about their outcomes with them. When I was undergoing the plethora of Autonomic tests at the Mayo last year, the doctors here were very enthusiastic about Ketamine infusions.

Best wishes to you and everyone. It's one day at a time and one step at a time.

TeeTee

I guess there is hope Winsantor is working hard on a gel to release which maybe a true cure for peripheral neuropathy

Hi. I’m experiencing some weird symptoms as well burning, prickling and hot skin). Doctor said I had very high levels of B6. I live in Mesa and am thinking about going to Mayo for another opinion. Do you have the name of the doctor you will be seeing? Thanks!

Hi, @1834 - I believe you were asking @teetee7 about which doctor at Mayo Clinic, correct?