I can't get properly diagnosed and I'm spiraling

Hello @sasquatch1031, Welcome to Connect. I haven't experienced tremors with my small fiber peripheral neuropathy but I'm pretty sure you are not alone and others have experienced them as one of their symptoms. Here's an article that you may find helpful on the condition and symptoms:

"Tremor is the most common movement disorder observed in patients with peripheral neuropathies, for whom the label neuropathic tremor is frequently used. "
-- Movement disorders and neuropathies: overlaps and mimics in clinical practice:
https://link.springer.com/article/10.1007/s00415-022-11200-0.

There is another discussion that you might want to read through to see if you can relate to the experiences of other members:
-- RLS, fasciculations, tremors, small fiber neuropathy: https://connect.mayoclinic.org/discussion/rls-fasciculations-tremors-small-fiber-neuropathy/.

Have you thought about seeking a second opinion or help at a teaching hospital or major health facility like Mayo Clinic?

You say you’ve seen multiple doctors that deal brain and nerves system but you didn’t mention a psychiatrist who also deals with the brain. There are many neurologists who are also double boarded or trained as psychiatrist too if you so choose. Your mental health is more important than anything else going on with your body. I’ve met and spoken with patients with similar symptoms over my years as a nurse now retired. I would be surprised if one of those specialists has not recommended this to you already. I hope you can find your answers.
I read that you do not want to take medication but want answers. You may need some medication to help get you over this “spiraling down” you’re currently experiencing of it is a mental health issue and we’ve all been there. Please don’t shy away from taking any medications if offered even for a short time. We cannot cast your head or cut out a bad functioning piece of your brain but meds do a wonderful job on a short term bases. Stay strong and don’t let this situation over power you for too long to seek help that is readily available.

Hi Sasquatch.
This is definitely horrible. Been there 23 yrs back after a spine surgery.
I would have to write u a book so I’ll try th very basics.
All our systems detox. Most Americans are vitamin/mineral deficient. A major lifestyle change helps reverse what can still be reversed.
Get a reverse osmosis water filter-gravity fed. PurOne water filters do it all. Th only one I could find.
Eat n drink organic only.
No plastics to store food.
Don’t heat/eat from styrofoam
Th liver n thyroid get toxic first. Causing hormone imbalance which tends to hit whatever your weakest system is for YOU first.
See a functional medicine Dr. They’ll do thyroid n general labs first to evaluate anything off.
Whole food vitamins only, nothing lab created. Study metabolic function to learn how we use food.
FOOD is medicine.
Food can also change DNA if it’s not great. Think about that.
Get a good counselor. Pain got me first so I saw a pain counselor first. When anything impacts th entire life it’s difficult to adjust even with help. U will help yourself and anyone who loves u. You both deserve that.
Once u get a better handle on th exact issues and nutrition th panic attacks should improve, eventually will go away.
Trudy Scott uses food and things like GABA to help anxiety, panic n bipolar issues.
Panic by itself is a deficiency. Maybe more than 1.
Check out holistic thyroid support.
Dr Westin Childs
Dr Josh Axe
Dr Tom Brimeyer ( Forefront Health). Great, really good, supplements.
Hypothyroid Mom website( great easy descriptive thyroid / metabolic health)
Hormones are unbalanced too.
Milk thistle is a great liver support

I wish you all th best. Have faith, God sent you here to get help🙂🇺🇸✝️

Hi Sasquatch, cool name, I feel a little funny addressing you by that name but it makes life interesting. Hang in there man. The best thing I could suggest is letting it go as far as getting answers. Keep going forward but you need to calm your inner state of being. I have neuropathy and I find listening to binaural beats by GOOD VIBES or NINAD music for nerve regeneration helpful. A lot of people say that it helps them with nerve pain. It also helps you calm yourself. I've been through some stuff and it can get crazy trying to get a diagnosis. I would be open to what is presented to you and try things. I have anxiety and was told to take an antidepressant and I thought it was not right for me but it was. So just be open and try things and if it doesn't work then move on. But most importantly for your own sanity you need to take it slow, one day at a time. Even one minute at a time. Read the Power of Now perhaps. Practice mindfullness and stay present as much as you can. But let go and try to have positive self talk. I will get better, I am ok now. And then let it go. It will figure itself out. Don't obsess on your symptoms. The more you do the worse it gets. When you notice the symptoms try the binaural beats with headphones. Get your mind off yourself. I hope the best for and take care. There is hope

Medications are not the enemy. I take a lot of medications. These days I am concerned with side effects but more so about drug interactions. But I try to be careful. Over the years this problem, begets that problem, and that problem begets those…The medication controls what is not regulated. For the most part. Mental health is so important. If you are anxious you need tools to try to reign it in. Look into square breathing. When I am unable to sleep or ill at ease I use “Square Breathing”. I hope you feel better.

I'm like you, don't want any medication for their side effects, so put up with idiopathic sfn.
I'm actually glad drs didn't find anything more serious!
What's the point of getting 100% diagnosis, if you don't want any meds for it? This medications treat symptoms only anyway .
So, for my symptoms, be it pain, tremors, numbness or mental sadness I take supplements, which have much less side effects.
This group is fantastic in recommendations for something to try, or web search for yourself.
Walk is great, or any sport you're enjoying is excellent for your symptoms too.
Sleep is very important, you can try supplements for sleep like melatonin, magnesium, NAC, R-ALA, medicinal marihuana etc.
You can possibly get proper diagnosis as more symptoms develop, or rather not.
Stay positive and learn to live with that. Most people have something now and then!😊😉👍

You have anxiety if your having panic attacks.I have had GAD for 25 years. A small dose of ativan was a life saver for me.
I have take clonazepam fon 24 yrs 1 mg 3 x day no increase ever been decreasing last 5 years.
Nothing but great help for me.
I am diabetic and have neuropathy,there are no answers for the most part treatments are being tried from Mayo clinic.Clevland clinic,and Loma linda University.Gabapentin has been a lifesaver for me the last several years.I get about 7 good hours sleep if I take my gabapentin.
Calvary Neuropathy Association is a non medical neuropathy support and help group of suffers of neuropathy that pool knowledge. God bless you,I pray you do well.

Yay for meds. I’m just so grateful that they exist for us.

Me too julpat. I don’t think I’d be alive today without them. That, believe it or not is an optimistic statement! 🙂

I had a consultation with a MD at Loma Linda University and one of the things that I learned is that they do a lot of testing for food allergies and foods that would cause inflammation and they don't prescribe a lot of medication I don't believe from what I gathered I had quite a long conversation with one of the MDS there on Zoom