Like the title says....I take individual doses of two different mineral supplements, competitive inhibition, that I believe amount to an effective treatment for a disease I have that's yet to be diagnosed.
A diagnosis is desperately needed. I want to get pregnant soon but am leary given my less than desirable state of health. I've turned here because I don't have insurance and because I've lost faith in the medical community. Dealing with a doctor face to face at this point is more than I can take emotionally.
My symtoms started when I was very young (7-10). I'm 36 now. Cover many areas including neurologic. These are the most dehabilitating of them all. If I lose the job I currently have I won't be able to work at all. I can't sit for more than an hour at a time. Muscles are just to weak. The pain doesn't feel good, but it's not what keeps me from sitting. After an hour I literally start to "fall over". The muscles that hold you up just don't work anymore and I start to slump. If I make myself sit for 2 hours straight and no more in a given day, and do that for 3 days in a row, I won't be able to walk on the fouth day. I can sit though. My current job takes me on an 8 hour route around the city. I drive for about 10 minutes, walk into the facility. Takes about 5 minutes an return to my car and I'm onto the next stop. A normal person can do this in 6 hours straight. I can do this job because I take a 20-30 break every hour. This gives my mucsles time to relax and recouperate.
I remember being around 9 or 10 when I'd sort of be streching and when it came to my feet, I'd stretch my toes by moving one forward and one backwards. They'd get "stuck". I mean they'd just stay in that position. There was a little pain associated with it on occassion but nothing major and the duration was very short. If I'd bend my knee and turn my ankle I could get my toes "unstuck".
I also started exeriencing fatigue at this time. Nothing too major, but I noticed I seemed more tired than my peers in certain situations and I could never figure out why.
In high school I had to take a PE class the last semester to graduate. I hadn't really had a PE since junior high. 3 years. I thought of myself as athletic so didn't worry too much about it. Thought it'd be an easy A. I was alarmed at what happened during that class. It was a track class and I could not keep up with my peers. It was like I was always coming in last. We'd have to run our warmup laps and everyone would literally lap me, sometime twice. That was about a 30 minute class. When I finished people would always make comments about my legs and face and ask why I was always so red. It was very abnormal. I didn't experience any pain.
I've had confusion and memory problems.
I started complaining and going to doctors my junior year in college. Couldn't finish my last year because of my deterioring health. When I started complaining about weakness they did an emg. It showed delayed never velocity. Doc put me on 130mg of steroid. IV then oral. Thought I had a guillian-barre syndrome. It didn't help. Doc told my family I was cured and it just take time for me to get better. I never did. Just got worse. Family believed doc and thought I was a hypcondriac. I quit telling them what I was experiencing.
Moved to a new city in '94. Saw new docs. They ordered muscle biopsy. It was normal. So have been all MRIs of spine and head, and subsequent emgs. That docs noted winging of scapula and diagnosed me with a metabolic myopathy with real conviction. He lost credibility with me when he suggested a treatment where you put all your blood through a machine that cleanses all the anti-bodies. It seemed too radical.
I tried to go on with my life as best I could. In winter of '05 someone made comment of how pale I looked and told me to take iron and a multivitamin. All previous tests had been normal and never revealed anemia. I've always been cold intolerant to the point of crying in the dead of winter when I just couldn't get my feet warm. Note: I lived along the gulf coast. 50 degrees felt like a blizzard to me. The only way I can get warm was by a warm shower, a hair dryer or heating pad.
I always needed massages to get my muscles unstiff, but the relief was limited to the time I was getting the massage. My muscles did not hurt when touched, but rather felt good. Stretching did not help. By 2003 my muscles had contracted around my elbows, knees, and hips. I could not straighten those joints 100%. You couldn't tell my looking at me. The contractures were not severe. Nevertheless I couldn't straighten those joints all the way.
In the winter of '05 I started taking the first supplement. Not everyday at first. After 3 months of taking it daily though I began to feel the first spams in my back release. It continued about on a 3 month cycle until the last six months. I feel like almost all of my spasms are gone. The weakness is not. About a year ago I started the second supplement. With that my life has turned 180 degrees.
Because I still havet he weakness and exercise intolerance I'm still very limited in my activities and day to day functions. I need a diagnosis.
My boyfriend is India and I want too make the trip over there to meet his family, but can't make the trip as is. I can't sit more than an hour, much less a 15+ hour flight to Bombay.
That is just one example of why I need a diagnosis. There are many more. I'm hopeful that a proper diagnosis may help me figure out what else can be done to regain my strength.
Also, others who have what I have may benefit from my treatment.
*diagnosed with diverticulosis in early 20s
miscarried at 9 weeks at age 25
until mineral supplementation I always woke up feeling worn out, like I'd been hit by a mac truck
now I wake up feeling well rested and happy to start my day
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