Riddle me this. It's been going on for thirty years. Any guesses? I have a neurological appointment scheduled soon. If you stick with this whole thread, it is MUCH MUCH MUCH appreciated and thanks in advance.
A little background: When I was 21, I was at a sporting meet feeling fine. It wasn't hot--it was indoors and air conditioned. All of a sudden, out of the blue, I got a dizziness in my eye and a heaviness on top of my head and I was dizzy for three straight years. At the time I also had mildly swollen lymph nodes, but they went away. I had a ton of tests, but this was back in the 70's and things weren't as good as they are now. I had a brain scan and some ENT and eye tests and blood work. The only thing that came back was toxoplasmosis and the symptoms were extreme for that. The symptoms never really disappeared completely. I have learned how to self-medicate with Ibprofen or Tylenol and a Valium type medication so that I can walk without falling to one side. Here are the symptoms that remain. Oh, yes. I was told "it is all in your head." I so know it's NOT in my head.
1/history of autoimmune diseases in my family. Brother has Crohns Disease. Sister has a rare autoimmune disordser of the ear--she sparatocially loses her hearing. She has chronic tinnitus from it. I forgot what it's called. Mother died of brain cancer. Father 85, healthy, dancing, chasing women.
2/I have a chronic feeling of tightness in my left eye, which can cause dizziness and make me feel like I'm falling to the left.
3/Heaviness on top of head too. These two symptoms never go away unless I am medicated with my concotion.
4/extreme tightness in neck, chronic. A chiro didn't help it.
5/Starting at age 50, a very few ocular migraines. An eye exam ruled out Optic Neuritis. I have another eye exam scheduled for this year. The last one was three years ago.
6/CAT scan showed nothoing. An MRI will be scheduled. I've never had one.
7/I have A LOT of energy, which makes me doubt MS, Lymes, CFS or anything else that would explain the weirdness of my symptoms. Can you have any of this without being tired all the time? I have had periods of my life where I've been tired. I had Epsen-Barr twice (yes, twice). Once I was 17. Once I was 45. I'm 55.
8/I had tingling and numbness in my arm once and went to ER. They said it was from hyperventilating. Okie dokie.
9/I have cognitive deficits from the frontal left lobe. I have had this problem since I was young. When tired, I slur my speech (since age 27--I remember the night it happened. I also stutter at times or can't find words). This is also since age 27.
10/I have no idea what is wrong, but I do know that something is. With all your Wrong Diagnosis experience maybe you can venture a guess. When I put my eye symptoms and heaviness in left side of head or body or dizzness and slurred speeched and cognitive issues (one or all of these symptoms) into the search engine, I always come up with MS, Lymes, and CFS or Fibromyalgia. The thing is, I have lots of energy for my age and work out each day AND I have heaviness on my left side but not a lot of pain either in my head or in my joints.
Am I an abboration? I do not have a B-12 deficiency (I have a check up each year). I eat healthy and take supplements. I take Paxil and Klonopin, but don't drink or smoke or take any recreational drugs and I never did.
Thanks for anyone who stood by this post and big :D for anyone who ventures a layman's guess. I will go for anything. I have even looked up chronic silent migraine syndrome to see if such a thing existed...lol.
My stomach is ok. I just had a colonscopy.