Anyone out there with COMPLETELY NORMAL testing - what should I do?
 

Just wondering if there was anyone out there with all the symptoms of peripheral neuropathy, and have had all the tests done with completely normal results. Here is a list of all the the tests I've had done (MRI's - Entire Spine, brain, CT scan of abdomen/ pelvis, PET scan of entire body, full Blood Workup, full Rheum panel, multiple EMGs, Autonomic Sensory Test, Evoked Sensory Test (?), Tilt Table test, Skin biopsy for SFN)

My Neurologist things that I've had a comprehensive testing but I wonder if there's some obscure test/ diagnosis that they are dismissing (Celiac, Gluten, MCAS, etc)
The neurologist is chalking it up to Central sensitization syndrome. I don't feel like this is right as the sx have gotten progressively worse (from tingles in hands and feet to now numbness/ pain).

Just wondering if anyone has had similar results only to later discover some answers or had some other tests that revealed something? Any suggestions on where to go from here? Doctors just seem to want to throw meds -- have tried lyrica, gabapentin, and shot bursts of steroids (prednisone?) - nothing seems to work.

I've NEVER done any tests. I know what nerve damage feels like, burning, tingle, etc etc etc. I don't want their drugs so why go for all the tests, that what I feel for me.

All my issues came on after hip replacement in 2010, and I was 72. Do you know what caused your issues?

I've posted a LOT of info in the PN group here and so have MANY OTHERS.. Look at the Inosine and Sphingolin and give them a good trial. They helped me a lot. You'll get more info here than an MD's office. Topically I swear by Topricin for Pain...

Your experience is unfortunately pretty common. There is research that indicates that a lot of the various neuropathies are related to mitochondrial dysfunction

You might want to try some of the supplements that have been shown in research to help your mitochondria power the small fiber nerves in your body ( presumably clean EMG, clear Spine/Brain MRI's and sensory symptoms point to small fiber neuropathy). These supplements are Alpha Lipoic Acid with L-Carnitine, COQ10, and nicotinamide riboside. They are pricey but the first two have a proven track record and nicotinamide riboside has shown great promise.

Here are some links:

Alpha Lipoic Acid:

Supplements for Neuropathy: Vitamins and More

COQ10:

Coenzyme Q1 prevents peripheral neuropathy and attenuates neuron loss in the db−/db− mouse, a type 2 diabetes model
Prophylactic and Antinociceptive Effects of Coenzyme Q1 on Diabetic Neuropathic Pain in a Mouse Model of Type 1 Diabetes | Anesthesiology | ASA Publications

Nicotinamide Riboside

Nicotinamide Riboside, a Form of Vitamin B3 and NAD+ Precursor, Relieves the Nociceptive and Aversive Dimensions of Paclitaxel-Induced Peripheral Neuropathy in Female Rats - PubMed


Good Luck

thanks for the links to the supplements. I've tried some of the supplements in the past but not all of them and perhaps not enough dosage? I realize that there's a lot of people who have been given an "idiopathic" dx - where docs have basically given up looking for a cause but like Caroline mentioned.. finding a cause is actually pretty important, esp if its autoimmune/ MS/ etc.. (things like IVIG won't even be offered without a dx).

As for small fiber.. i did a biopsy and it was negative.. but i realize they could've just missed the right spot to biopsy. However, according to a different neurologist, small fiber is recent in discovery (last 10yrs) and not much can be done about it other than offering standard drugs (lyrica, noratryptaline, amatryptaline, cymbalta... etc excuse my misspellings).... with some folks even having to combine drugs, etc...

I was just hoping someone out there with my situation actually tried a cocktail that worked and could offer suggestions.

On tope of it when the standard tests don't show anything, I've had doctors suggest that its psychologically related (anxiety, trauma) or some sort of central sensitization syndrome (which doesn't seem to fit)... If its anywhere in this realm than they are suggesting years of therapy might help..

I just don't know which route to go and was hoping someone could point in the right direction without me having to guess and spend countless hours/ dollars chasing the next guess.

Thanks again for the links.. i'll definitely keep supplementing.. at least that is the least expensive/ least potentially damaging route to take for now.

A jillion MRIs, blood tests, spinal tap, nerve conduction study, and six years later....MCAS.

Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases. - PubMed - NCBI

How did you finally get the MCAS diagnosis? What are you doing as far as battling it?

Sorry for the delay in responding.

I was in the middle of a horrendous flare one Friday night when my sinuses slammed shut on me. I had no congestion, just couldn't breathe through my nose at all. Zero air flow. I knew that had to be a big hint.

I spent the weekend consulting Dr. Google, and long story short, by the time Monday rolled around, I had educated myself on Histamine Intolerance (HIT) and MCAS. I called on Monday to make an appointment with a highly rated allergist/immunologist just two miles from men. In an AMAZING stroke of luck, he just so happens to be one of three doctors in Maryland listed as being MCAS-aware in a large MCAS support forum on Facebook. He strongly believed I was correct in my self-diagnosis and did some bloodwork. My histamine levels were indeed high.

The fact that I have almost purely neuro symptoms is atypical. Most MCAS patients have more typical allergy symptoms or gastric symptoms, but to the extreme. I'm in uncharted territory for him, but he put meon a typical HIT regimen.

I take 40 mg Famotidine (Pepcid AC) every morning and night, and one Zyrtec at night. I also have DAO supplements I take, and have switched to a low histamine diet. All of this has definitely made a big difference in how I feel, but I still have lingering "baseline" neuro symptoms. I'm going to be consulting with a MCAS-knowledgeable Integrative Medicine doctor in Illinois who has helped another MCAS person I met on FB who is the only other person I've encountered with neuro symptoms similar to mine. The goal is to find the root cause of my MCAS.