I have been to see numerous doctors and still do not have an answer after 4 years of searching. I am a 35-year-old female, married, with 3 boys. I suffer from the following: severe chronic fatigue, migraines, chronic pain, dizziness when standing up, loss of peripheral vision when turning head far to side, numbness in extremities, legs feel like they are on fire, alternating diarhhea and constipation, had total hysterectomy 3 years ago due to benign fibroid and now on HRT, had gall bladder removed 2 years ago, muscle weakness in legs (sometimes one side or both), had episode 20 years ago where I woke up one morning and couldn't move my legs - took 1 week to regain full mobility with no known cause, just had repeated episode of temp leg paralysis.
I have had so many labs drawn - negative for lyme disease, syphilis, rhuematoid arthritis, lupus, pre-cancer, hormones normal, inflammation normal, etc. Only thing they found was I am deficient in vitmain D.
Had MRI of brain and cervical spine 2 years ago - showed bulding cervical disc, degenerative disc disease, small thoracic syrinx. Was told syrinx was probably there since birth. Had recent MRI of brain, cervica, thoracic, and lumbar spine. Brain negative for lesions. Had "spot" on old MRI that neurologist says may have been due to my migraines. Newest MRI of brain was "normal". Same bulging disc in cervical spine with no nerve involvement. Thoracic spine ok. Syrinx in thoracic still there and SLIGHTLY enlarged but told ok. Lumbar shows DDD, bulging disc, tears in discs, and small cysts between vertebrae. Also no nerve involvement.
Specialist said it was fibromyalgia, rheumatologist said it is NOT fibro, neurologist said it may be MS until he got my results and then said it is fibro. Rhuematologist said NO! Going back to neurologist tomorrow since I can't walk now. If he can't figure it out rheumatologist will send me to one more neurologist and then send me on to Cleveland Clinic for help.
Hi there. I can relate to your frustration. I had meningitis 10 years ago & have not been the same since. When I did not get better, they diagnosed Fibromyalgia. I tested negative for Lyme at the time. Recently by chance, my doctor asked if I ever lived in the southeast which I had. He tested me for Lyme and some co-infections. I again tested negative for lyme even though there were a few bands that were positive. I was tested for ehrlichia (HME) and tested positive. Lyme testing can fail to catch the infection, and from what I read up to 50% of the time. I would get retested by a recommended Lab. I don't think I can post any specifics as I think it is against the rules, but please feel free to email me if I can help. I can give you some info that helped me. Best wishes.