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MS? Lymes? Thirty years of grief?

Posted In: Medical Stories 1 Replies
  • Posted By: pammar94
  • June 8, 2009
  • 03:21 PM

When I was 21 (I'm 55) I was at a sporting event and suddenly got very dizzy in my eye with a heaviness on that side, and I've had symptoms ever since. For several years I could barely get out of bed due to dizziness. I also had other weird neurological symptoms, but that was the worst one. At age 27 (yes, I still remember the age) I started stuttering and slurring words. At the time, many years ago, a spinal tap ruled out MS (but as long ago as that, who knows if the knowledge on diagnosing was there) and I had a few primative head scans...lol. They didn't have CAT scans or MRIs then. I did have a recent simple CAT scan and it was normal, but not sure they did contrasting or anything. I still have problems, along with cognitive issues (I have always had them...it's not due to aging). When I put my biggest symptoms into the internet, I come up with MS, which I do think I could have, although I've had very little numbness--more heaviness on the left side. When I smile, my left side doesn't come up quite as high as the right--it's weird--yet nobody can find anything. I'm going to see a neurologist soon and asked to be tested for Lyme's Disease too. Any other suggestions? I guess I'm not dying. It's been thirty years. Amazing how one can have so many odd symptoms for so long and get no diagnosis. To this day, unless I take two Tylenols AND a muscle relaxant like Valium, I can't walk straight--there is a heaviness in my eye which eases with the Valium-type med (I take clonazapen about once a day since it's long acting). Yet I don't know why I have to take it. I have a chronic tightness in my neck, but have been there/done that looking for pinched nerves, etc. Nobody ever finds anything, and I know it's not in my head. Thanks for reading this and for any suggestions. (When this first started, I had some swollen lymph nodes and a low white blood count too and I still tend to have a kinda low white count).

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  • When I was 21 (I'm 55) I was at a sporting event and suddenly got very dizzy in my eye with a heaviness on that side, and I've had symptoms ever since. For several years I could barely get out of bed due to dizziness. I also had other weird neurological symptoms, but that was the worst one. At age 27 (yes, I still remember the age) I started stuttering and slurring words. At the time, many years ago, a spinal tap ruled out MS (but as long ago as that, who knows if the knowledge on diagnosing was there) and I had a few primative head scans...lol. They didn't have CAT scans or MRIs then. I did have a recent simple CAT scan and it was normal, but not sure they did contrasting or anything. I still have problems, along with cognitive issues (I have always had them...it's not due to aging). When I put my biggest symptoms into the internet, I come up with MS, which I do think I could have, although I've had very little numbness--more heaviness on the left side. When I smile, my left side doesn't come up quite as high as the right--it's weird--yet nobody can find anything. I'm going to see a neurologist soon and asked to be tested for Lyme's Disease too. Any other suggestions? I guess I'm not dying. It's been thirty years. Amazing how one can have so many odd symptoms for so long and get no diagnosis. To this day, unless I take two Tylenols AND a muscle relaxant like Valium, I can't walk straight--there is a heaviness in my eye which eases with the Valium-type med (I take clonazapen about once a day since it's long acting). Yet I don't know why I have to take it. I have a chronic tightness in my neck, but have been there/done that looking for pinched nerves, etc. Nobody ever finds anything, and I know it's not in my head. Thanks for reading this and for any suggestions. (When this first started, I had some swollen lymph nodes and a low white blood count too and I still tend to have a kinda low white count). Hi Pammr, I suggest that you come over to the b12 deficiency forum, http://forums.wrongdiagnosis.com/showthread.php?p=182282#post182282,and post you story over there. Also check out our list of about 300 symptoms of b12 deficiency including lots of neurological ones. Many folks there have a 30 year history of strrange neurological symptoms before finding out that the right kinds and brands of b12 work at removing them.
    Freddd 3576 Replies Flag this Response
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