Small fiber neuropathy- unilateral facial paresthesia, carpal tunnel

Posted by holmes4408 @holmes4408, Sep 17 1:50pm

Does anyone have small fiber neuropathy along with unilateral facial paresthesia, bilateral carpal tunnel, tinnitus?
I have non-length dependent small fiber neuropathy from a skin punch biopsy, as well as also severe bilateral carpal tunnel (not painful either) diagnosed from an emg. The right side of my face is an odd feeling, not completely numb but can be tingly and 'tight' feeling, especially around my right eye. My neuro told me it's anxiety and I never went back. It's been 3 years and I really can't take it anymore and I am going back to a new neurologist. All of this happened suddenly, like a split second. I was sitting on the couch and all of a sudden I lost hearing in my right ear and extreme vertigo. My right side of face became numb. Went to er to rule out stroke, it was not a stroke. ENT ruled out Meniere's and no acoustic neuroma (neg MRI). My neuro doesn't think my symptoms are connected and it's related to my anxiety, but I know my body and I know they are. My right side of face has been numb for 3 years, and my arms are getting weaker (probably carpal tunnel). I have eye floaters now (could be totally normal, got my eyes checked and they are healthy). I spoke with a very well known small fiber neuropathy neurologist and he mentioned it's likely immune related. My neuropathy isn't really painful, just annoying as my feet and hands constantly go to sleep/completely numb. Sometimes at night, both my arms get really numb and that's the only time it's really painful. I got a referral for rheumatology, I go next month. I have no trauma to my wrists/arms and no over-use to explain the severe bilateral carpal tunnel. Anyone have similar symptoms? If so, do you mind sharing what they are and if you have any diagnoses?
My WBC have been trending down the past few years, currently 3.1 and my LDL is 271, cholesterol is 352, I have normal triglycerides and normal HDL. My neutrophils are borderline low 1.5. Those are my only abnormal labs, everything else is normal. RH factor < 10, ANA neg.
Thank you!
Savannah

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Sep 17 3:32pm

Hello @holmes4408, I can't imaging how difficult it must be to have the right side facial numbness for over 3 years without knowing what is causing it. I have small fiber peripheral neuropathy and carpal tunnel but don't have the facial paresthesia. It's good that you don't have the awful pain that can go with the paresthesia but the numbness has challenges of it's own which is what I have with my legs and feet. I did a search of Connect and there are a few members who have mentioned facial paresthesia if you would like to scan through their comments - https://connect.mayoclinic.org/search/comments/?search=facial%20paresthesia.

You mentioned all of this happened all of a sudden along with hearing loss in your right ear. I'm guessing you many have already seen this article but it does mention why the doctors thought you may have had a stroke when you went to the ER and they ruled out stroke as cause.
-- What causes numbness on the right side of the face?
https://www.medicalnewstoday.com/articles/326129
You mentioned having a referral to a rheumatologist. Hoping you get some answers at the appointment. Do you know when your appointment is yet?

celia16 | @celia16 | Sep 17 8:17pm

You really have had a rough time of it. I’ve had similar issues, with some additional ones too. Part of mine was diagnosed as Post covid syndrome and part B12 deficiency. But, not sure. It’s frustrating. Some if my symptoms have resolved, but my hands still go numb during the night. Carpet tunnel is uncertain.

cayman44 | @cayman44 | Sep 17 9:48pm

Did you have covid, when, initial, Delta, omicron? Did you take any covid vaccines and boosters?

celia16 | @celia16 | Sep 18 1:31am

In reply to @cayman44 "Did you have covid, when, initial, Delta, omicron? Did you take any covid vaccines and boosters?" + (show)

No problems with vaccines. Symptoms began right after my relatively mild case of covid.

dlydailyhope | @dlydailyhope | Sep 18 8:45am

@holmes4408
I have small fiber neuropathy, tinnitus, facial burning, hearing loss, bilateral carpal tunnel plus spine issues (stenosis, myelopathy spinal cord compression injury, degenerative disc disease, etc.). I highly recommend you get a brain and cervical spine MRI to look at compression of spinal cord and nerve roots based upon your symptoms. You may want to also check blood vessels/arteries in neck to check for blockages since your cholesterol is so high. An orthopedic spine specialist can help with cervical spine, neurologist with brain MRI and primary/cardiologist to do ultrasound of carotid arteries.

3740 | @3740 | Sep 19 8:23am

I have Neuropathy from Chemotherapy. Both Feet & Hands are Numb all the time. Can’t walk without a walker.Eating is Very Difficult. NO CURE!!

raepent1 | @raepent1 | Oct 2 12:01am

Wow - I have so many similarities to exactly what you’re describing - unfortunately i have some other aspects of grocery list of problems - all of which became extreme suddenly (some of the symptoms I now know that i was dealing with for years, were the slow precursor to the eventual autoimmune diagnosis’s I have - so the difference between the both of us is that my ANA is actually positive and has trended upward with now nuclolear pattern - but this SFN seems to not have enough information to encompass everything and everyone, obviously - so I’ve had a hard time to connect with it and how it’s really affecting me - I do have numbness and tingling and it’s VERY VERY frustrating, as recently I’ve begun dropping things and I don’t even realize my hand quit holding it - it’s kind of scary - but what I call the Spider-Man senses I have where I’m so sensitive to the slightest breeze or my clothing, or even the smallest tiniest speck of dust or lint to other people and I can feel it and it’s raking my skin raw essentially until I get it off my skin or clothing - so i feel your frustration and pain - feel free to private message me if you ever need to vent! sending hugs and blessings your way my friend!

proteusx | @proteusx | Oct 3 4:01pm

I second the motion to get a full spinal MRI. There was a small study done in which several people with diagnoses of varying PN types, non-spinal related, were nonetheless found to have spinal compressions which, when relieved, resulted in notably less PN. A couple other physicians I've come across have noted the same thing in a few of their PN patients.

margesil | @margesil | Oct 6 8:22am

I’m trying to figure out cause of bilateral facial numbness. Feels like I was given novacaine that is 1/2 worn off. It started about 2 weeks before tooth discomfort that turned out to be an abscess and led to dental surgery. Thought that was the connection, the answer , but told no by oral surgeon. I haven’t seen my neurologist yet. Wondering if anyone with PN has experienced bilateral facial symptoms.