I have been ’sick’ for about 2 and a half years. I wanted to get some advice or possible answers from people that have been diagnosed and maybe experience some of the symptoms I have. I don’t know if they are all related but I will list them and see if I can get any help. I really appreciate this. BTW, I want to say that my neurologist did a very good job but he was exhausted and I really appreciate his effort. So here they are...
Initial symptoms - burning face/’brain’, temporary (about 2-3 mins) blindness and seeing spots in one eye, feet tingling and numbness and turning purple and not warming up no matter what I did, a rash appearing seemingly under the skin bilaterally on the sides of my knees and the inner part of my forearms and elbows (this rash looks like purple splotches and can be seen clearer in fluorescent light or sunlight), random moderate to severe pain (burning, stinging, tingling) in different areas of my body and different times (legs, hips, head, face, back), balance and coordination problems and severe fatigue.
I wound up in the ER soon after the symptoms first started with severe burning head, ears, face and back; complete numbness in my arm and a stiff neck. My face, scalp and ears were visibly the color of a lobster. My reflexes were fine and the MRI was clean. While talking to the nurse then painful burning on one side of my back transferred completely over, through my spine, to the other side. They sent me home with a possible diagnosis of Neuropathy and a referral to see a neurologist. He tested me for lupus first. It came back negative but I have seen that the test is hard to get right. I have never had the butterfly rash on my face though (that I know of, at least not the scaly kind, but I do get flush a lot... just figure it has to do with the burning.) Diabetes was negative, negative for MS, negative for thyroid problems, negative for neuropathy although they said I had some problems with some nerves in my legs (??).
Other symptoms - sour stomach (new - at least 6 months, all day - every day), throat feels like there is something stuck at random times (no burping - new - 2 months), temporary loss of hearing on one side at random times but comes back quickly, balance issues, memory problems, random slurred speech throughout the day but only a couple times, migraines since puberty (about 2-3 a month), I used to have headaches every single day until this all started - now I have them maybe 2 or 3 times a week, which is a relief.
Any responses could possibly be very helpful. I don’t know if chronic stress can cause all of these symptoms or if they are even all related but I would like a medical diagnosis before I just give up and blame it all on chronic stress. The random painful burning symptoms aren’t as frequent anymore but I can’t even work out. Just walking up 5 flights of stairs 2 weeks ago made my legs hurt very bad.
I also have epilepsy (but haven’t had a seizure in about 4 to 5 years so I think it may be gone) and Scoliosis (not severe) which my primary care doctor says is putting pressure on my spinal cord.
I don't know if this matters either but my dog got extremely sick after being boarded in a kennel and coming home COVERED in ticks. Needless to say, 2 of them engorged themselves in me. This was about 5 months before the symptoms started. Also, I got bit/stung but an unfound insect about 3 weeks before the symptoms. The bite on my foot took a year and a half to heal. I have not been tested for Lyme (also a fickle test).
I know this is a lot... some of it might not even be relevant, but it has been over 2 years. :-)