Newly Diagnosed

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Newly Diagnosed

Postby TracyK » Thu Jun 10, 2010 3:30 pm

I am not sure how much to write about myself as this is my first time entering a forum like this. I started down the path to diagnosis after having my left leg go numb and tingley and never really resolve 100% for the last year. In hind sight I think I have had at least two other exacerbations, resulting in tremors in my hands for a couple months, and some bowel issues for about 6 weeks. I was diagnosed with MS in late April after a horrific experience with spinal headaches from my lumbar puncture. I had 4 bands show, and my MRI’s showed a lesion in my brain and some “spots” in my spinal column. My Nuero told me I caught it very early as if this was some kind of marvelous achievement I made. I was less than flattered with the outcome. I have adjusted the last 6 weeks or so rather well I am told, and been on Copaxone for a little over a month. I don’t know if I am just in denial and going through the motions or if it has actual sunk in yet that I really have MS. Regardless, I thought I would start to get to know everyone on the site and have some people in my life I can rely on who understand what all this really means and the things I am experiencing.

One thing that is troubling me is a new twitch in my left eyelid. It started a few days after the LP and it has not resolved. At first, it was just an irritant I could feel the quiver but couldn’t see anything going on. Now, I can see my eyelid tremble and shake and I can feel the tremble when I place my finger gently on my eye lid. I have a call in to the Nuero on it, but she has yet to return my call.
Any advice on MS or my crazy eye is appreciated.
Warmest Regards,
Tracy
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TracyK
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Postby lectricgenius » Thu Jun 10, 2010 5:53 pm

Well, you are in the same boat as me. I had my first attack last fall and was diagnosed in January of this year. It sucks, but there is nothing we can do about it unfortunately. You may try to get tested for CCSVI as everyone I have talked to has improved dramatically. As for the issue with your eye, it is just another MS tragedy. Everyone has different experiences. Me for instance, I have no tolerance for the heat we've got here now, and to make it worse I tried to go swimming the other day and it was like I jumped into a pool filled with ice water. Have you noticed that your weaker yet? I sure am.
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Postby TracyK » Fri Jun 11, 2010 8:15 am

Hi lectricgenius

I haven't noticed being weaker more so than tired. It hits everyday in the early afternoon. I'm planning on ytalking to the Nuero about this at the end of the month since I don't like my current remedy of talking 5 hour energy drinks daily. I was never tired like this before diagnosis so I'm not sure if it's the MS or the copaxone. Are you on a therapy too? As for the CCVSI I think I would like to see what happens with the research. My symptoms aren't "that bad" and I don't have the resources to fly to another country to have it done. It looks promising though!

Tracy
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Postby lectricgenius » Fri Jun 11, 2010 8:27 am

I am currently on tysabri for my MS. The issue of being tired is definitely the MS. I started taking Ampyra two weeks ago and it sure has made a difference in my ability to stay up longer and walk as well. For CCSVI, you can have the procedure done here in the states, you just have to see an interventional radiologist to have this done. Like my previous post stated, I know of several people who have had this done. Some have gone to Poland, but many others have had it done here.
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