Thread: Next step??
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Old 12-18-2015, 02:13 PM
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Join Date: Dec 2015
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8 yr Member
hibodhi hibodhi is offline
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hibodhi's Avatar
 
Join Date: Dec 2015
Posts: 3
8 yr Member
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Thanks everyone one for responding, I really appreciate the kind words of support and willingness to help a complete stranger, like myself!!!

So I have a bunch of questions and some more information about myself... I'd love to hear more from you guys

I'm working on a timeline/backstory to post when I have some free time. This started exactly two years ago (December 2013) when I was 27 years old.

So I searched around the site and it seems that "non-length dependent" (NLD) is not very common... Is that right? Is NLD small fiber neuropathy the same as "ganglionopathy" or "neuronopathy"? Is it also not super common to have zero nerve fibers found during skin biopsy? I made the neurologist show me the results and I honestly have zero... What could possibly wipe out all of them?!! Am I someone who could benefit from IVIG? Has anyone ever heard of Nitrofurantoin toxicity? That is the only thing I was able to find during all of my Googling, in terms of toxins... I had been taking that on/off for 2 years when this started.

I have had:
- 3 EMG/nerve conduction
- MRI of lower spine
- MRI of thoracic spine
- MRI of left ankle
- MRI of right ankle
*All MRI were without contrast
- Several EKG
- 24 HR Holter monitor
- 2 ECG
- Xray of lungs
- Xray of ankles
- Skin biopsy of ankle
- Skin biopsy of thigh
- Several "standard" blood labs
- 2 Rheumatologist full labs
- Eye exam

Medications:
- Lyrica
- Nortriptyline
- Percocet
- Compound cream
- Restasis
- Alpha Lipoic Acid
- Fish Oil
*I have tried Cymbalta, Tramadol, and was also taking Metoprolol

As for diet, I have been vegetarian/vegan for most of my life. I was temporarily eating meat when symptoms first started. I am currently a very strict vegetarian/almost vegan, minus a few things including fish oil and honey. I have kind of strange food cravings/addictions like kale, asparagus, cauliflower, sweet potatoes, oranges, and lentils. I was very athletic my whole life, lived outdoors, especially love(d) to run, and ride my bike to work and everywhere. Unfortunately, since this terrible pain started I've lost doing all those things that made me so happy. I'm crossing my fingers "Santa" brings me a stationary recumbent bike this year and I can get back to moving without passing out!
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"Thanks for this!" says:
St George 2013 (12-18-2015), zkrp01 (12-19-2015)