ambi50's Journal

Well at this point in time I have no diagnosis of what is going on in my body.  When I really think hard on this, the first time I every noticed something different with me was when I was a teenager, I use to almost break out into these shakes when I was getting excited about something, I was able to hide it since it wasnt that severe, or get my level of excitement down and then it would subside.....weird.....well that went away, next was bowel problems, which I have dealt with most of my life now. I also remember being really tired as a child, really hard to get up to go to school, felt like I was dragging all the time, that seemed to come and go too.

Was diagnosed with crohns in 1986 during the Vancouver expo, spent week in hospital and was put on asacol for about a year. Now different doctors say I never had Crohns...so who knows. They all do agree that I have a very severe spastic colon. I quit smoking around 15 years ago, gained alot of weight, felt very unwell at the time, started having these shakes that looked like I was having a seizure, usually on one side of the body only, mostly thrashing of head and wrist and arm movement, became sensitive to cold with muscles spasming and twitching, found out I had Hasimotos syndrome (autoimmune disease causing an underactive thryoid) been on synthroid ever since. Went back to smoking got weight down and cold sensitivity seemed to disappear. Also the shaking for the most part was gone too.  Was in a car accident a few years later, whiplash, actual second time I have had whiplash, six months later was so weak I could hardly get out of a chair, then muscular pain kicked in, was very house bound. Friends got me on chinese herbs which I though had helped immensely with the weakness. Was Diagnosed with Fibromyalgia. Not long after that moved to Florida, loved the heat as long as I was able to keep cool in it, warmth felt wonderful on my muscles, but needed to be in the water to keep cool or in an airconditioned setting which usually was set at 80 F.  Was in florida for 11 years and did pretty good overall, about a year before coming back to canada I had noticed some symptoms of right leg heaviness, weakness with spasms and twitching, thought it might be the start of vericose vein. Went to doc but nothing was ever done about it.  Also a car accident I had been in florida this now being the 3rd whiplash had me going for a lot of massage therapy. One day shortly after this I got up in the morning and I could not walk straight , I would veer to the side, also could not stand up straight would tilt to the side like a magnet was pulling me.....very strange....this lasted for half a day. Never found out what that was either. In the 11 years of being in florida I only had 2 instances of the shakes, also when I have the shakes I feel fine mentally. I quit smoking again just before coming to canada, So now for the past 1 and a half years I have been in canada, first year I was fine, didnt like the winter cold, had to couple times a day take really hot baths to heat my core up. Come the first summer towards the end I had a really bad shaking attack, but different from previous ones in that the tension felt in certain muscles very pronounced before the shaking started. Got these attacks frequently until New Years Eve. Now I have muscle tension, bandlike, regularly, twitching, some muscle cramping, aweful zapping pain, foot pain, cold  and hot patchy skin sensations, pins and needles,some numbness, twinging, weakness, creepy crawlies down the spine, burning, stiffness.

I had wonderful eyesite up to about 7 years ago and that is slowly getting worse, it is were I have to wear readers , but I have to use them for more than that , because sometimes I cant see what is in front of me clearly, objects and such., also the musles behind my eyes spasm which causes some blurring sometimes, but that will improve when spasms stop.

Went to a neurologist last summer he said I was having seizures, but EEG came back normal even when I had an attack during the process. Neuro more or less said it was all in my head, but an MRI had been ordered so followed through with that. Now same Neuro sends my doc a report stating something about demyelination on frontal lobes so wants me to have another MRI done, I wont go back to this Neuro because of his previous attitude so waiting to see another, only down thing is the previous neuro is the MS specalist for this area that I live. I am also going mid may to Vancouver to the Movement disorder clinic and the Neuromuskular clinic for metabolic disorders. So hopefully I will get some answers.  But one thing I refuse to get done is where they stick needles into the muscles to do testing. I have had that done and I will flat out refuse it , I do not tolerate that type of pain at all. Once I know more I will add more to this journal, hopefully some good news :)