Small fiber neuropathy - tongue

Hello.
This is a middle of the night writing so please forgive any errors or oddities.
My journey is new and still very terrifying. I was recently diagnosed with sensory- motor axonal polyneuropathy. Still trying to come to grips with it. It’s been moments of panic and lots of denial. Neither the Neurologist that performed the EMG/NCS or the one who ordered it could provide many answers other than to say it affects sensory and motor nerves, it’s systemic, and they do not know why it’s happening or how far it will progress. (I’m not sure if that is the same as the SNF mentioned in this thread?). I have an appt with yet another neurologist but not for another month!!
What led to testing and diagnosis for me was a progression of burning and buzzing that started in one foot then advanced up to knee then went on to do the same on the other leg. At first, I could only feel it while laying down. Now it’s constant. I also have blood flow issues, my feet get really red. Initially diagnosed and treated as Raynauds. Around the same time on top of my regular tinnitus, I developed a roaring engine that was in synch to the buzzing in my feet and felt like it was coming from outside of my body.

Symptoms I noticed prior that are intermittent: burning top of scalp, which is sometimes visibly inflamed. There have been days it hurt to move my hair- I thought it was an atypical headache. Burning in my mouth & sometimes lips and down throat.
A sensation of something sitting across nose(like glasses), swelling, red nose & purplish tint under eyes at times. ENT and doctors- it would take too long, but the ENT said nothing in my mouth and looked at me like I was nuts when I told him about the in-synch buzzing in legs and roaring in ears.
Lastly, balance and coordination. I feel my hands shake sometimes doing normal things that require little exertion- like taking a selfie, I have a difficult time hitting the right key on my phone when texting and this is constant.. When I walk, especially with my dog, I do stumble sideways a lot. I am not sure how to know if my gait issues are related, and if they feel worse simply because of the diagnosis…
I am hoping someone can speak to s few of these potential symptoms.
I also would be interested in hearing about others with similar diagnosis- the journey, cause, prognosis.

Thank you so much.

Welcome @nursegbythesea, I think you are not alone in your feelings with this condition. There is another discussion that you might find helpful:

-- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/

You mentioned you have an upcoming appointment in a month with another neurologist. I'm sure you have questions that you are trying to get answered. One thing that helps me is to plan my conversation with my doctor if it's something I'm nervous about or really need some answers. The Patient Revolution website has some useful tips to help plan your conversation that you might find helpful if this is something you want to do -- https://patientrevolution.org/visit-tools.

Have you thought about questions you want to get answered?

Hi John.
I have not thought of any questions yet but I have been trying to track my symptoms because I always seem to forget them when sitting in frying of a doctor.
I appreciate the advice and will check out both options. Thank you.