Hi all! I’m new on here, but have spent the last 1.5 years looking for answers from multiple specialists, labs, tests, and second opinions. To start, I do have severe hypermobility disorder. But 90% of my symptoms didn’t appear until 1.5 years ago when I had a bite from what the doctor said was a spider (possibly tick) in the early summer of 2017 in rural Indiana at a wedding. It had no ring so they dismissed it. Then this all started from what doctors thought was runners knee then moving onto EDS, lupus, MS, sjogrens, Marfans, and more.
(2) EEGs, EMG, MRI - normal
ANA - positive at test 1, negative at test 2
Lupus (tested twice) - negative
Lyme - img 0/3, igg 3/10 (bands 18, 23, 41)
Hormone levels - normal
Due to the previous labs and tests, my neurologist determined I have small fiber neuropathy. He is certain with this many symptoms and a normal MRI that it’s not MS, but he needs more convincing that it’s not Lyme.
He’s given me three routes for next steps:
1. See his infectious disease referral for 3 months of treatment for Lyme to see if there’s improvement.
2. Nerve biopsy for much more data.
3. Spinal tap for a *possibly* more conclusive answer.
I’m including my listed symptoms below, but if anyone has any ideas on what they’d choose or their experiences I’d love to hear. My most bothersome symptoms are the heat sensitivity and libido. Selfishly I think these are things that can cost me my relationship. I can’t leave the house in summer and go for walks, go on warm vacations, go to the beach, camp, etc. And the low libido piece is an issue for obvious reasons... At least with the pain I work through the day somehow and can still pretend to function (for now). But obviously all of the symptoms and pain and numbness i would wish away just the same.
I worry I’ll go with option number 1 and see no results and never know if I actually have Lyme or just need more treatment. My doctor believes with my neurological and nervous system symptoms that I would be late stage. I worry I wouldn’t see results and I’ll just never know....
* Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
* "Brainfog"; inability to think clearly
* Seizures; seizure-like episodes (no evidence on EEGs but suspected partial temporal lobe seizures)
* Parasthesias (numbness and tingling in hands and feet)
* Electric shooting nerve pains
* Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
* Libido (decreased)
* Dizziness or vertigo
* Difficulty making and/or retrieving memories
* Touch or weight of clothing on or against body causes discomfort (like sandpaper sometimes)
* Drooping eyelid
* Eye pain
* Flashes of light perceived peripherally
* Staggering gait (clumsy walking) which comes in flares
* Decreased libido
* Abnormal Extreme sensitivity to hot or cold
* Stiff neck, neck aches
* Feeling hot or cold often
* Reoccurring mild grade fever
Post Edited (Klhmed) : 11/28/2019 3:51:30 PM (GMT-7)