Posted 10/25/2015 3:04 PM (GMT -7)
I will try to keep this as brief as possible, but I've been battling a mysterious illness that doctors are clueless about and have recommended that I turn to Mayo Clinic. Before I do that, I would like to post my story to the community in hopes of some helpful ideas/tips.
I am 34 year old Engineer with no previous health problems, surgeries, etc. about 14 months ago, I started experiencing many nerve related symptoms. No recent fevers, colds, insect bites, etc. Was not on any medications. With a ~1 week onset, my symptoms were (and are): extreme daytime tiredness/fatigue, vestibular issues (motion sensitivity), unrefreshed sleep, tingling/numbness in limbs, scalp, face, muscle spasms, muscles cramps (legs), difficulty walking (stiffness, spacticity, weakness), sleep issues / insomnia, near bouts of fainting, light sensitivity, tinnitus, cold intolerance (my body used to be naturally warmer), cold feet, physical symptoms of panic/anxiety without the emotional. Food sensitivities became another issues - I am now allergic to flax seeds, almonds (other nuts?), and have oral food allergies to things like apples, cucumbers, etc.
Doctors initially thought MS, but that was ruled out by MRI and LP (Lumbar Puncture). I have seen multiple specialties mostly at Kaiser. I have seen about 7 neurologists that say this is not a "neurological disease". No best guess or theory other than SOMETHING is causing issues with my Nervous System. Doctors tried high dose prednisone but that had no positive effect, may have even made things worse. I am currently on CYMBALTA 40mg daily which IS helping with some of my fatigue issues, leg weakness/spacticity, and vestibular issues. I tried going down to 20mg a while back, and issues became worse. I am hesitant to increase the dose without first getting a root cause of my issues.
For my sleep issues, I have tried 2.5-5mg ambien and 0.5mg Ativan which helps some. Melatonin is hit or miss. Tried many other herbal / natural things as well without success.
2 brain MRIs 1 year apart - Negative
2 cervical spine MRIs- Negative
Brain CT scan - Negative
Inner ear CT - Negative
2 Nerve Conduction Studies - Negative
Chest X-Ray - Negative
3 Lyme disease blood tests - Negative
Spinal Tap (LP) - Negative
Overnight sleep study - No remarkable findings
Many,many blood tests over the past year all Negative.
Has anyone else had any of these issues, or a subset? Whatever I have, Cymbalta seems to help but I don't just want a "band-aid" answer. I am looking for an actual diagnosis. I am located in San Diego and prefer to see a specialist in SOCAL. The most notable issues right now are daytime sleepiness / fatigue, insomnia, unrefreshed sleep, motion sensitivity, sensitivity / allergy to certain foods.
Any information / follow-up questions are appreciated!