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Possible MS...need to vent
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EMANDMSMOM posted:
Hi all,

I have had "symptoms" for over 10 years and no definite diagnosis. I have tremors...which have slowly progressed, For the past 5 years I have developed extreme heat sensitivity. when i was initially tested 11 years ago, I was experiencing tremors, numbness in my left arm, and left side of my face. I had several MRI's(C spine and brain) C-spine was OK, brain showed 6 lesions. I was tested for Lyme's, vitamin deficiencies, and had evoked potential testing done. I was told at the time that I did not meet the criteria for an MS diagnosis, but it was possible that this was the problem with me. Now, I have increased tremors, heat sensitivity (this has gotten worse), spascisity in my right arm, and the facial numbness is back. I am also experiencing some muscle pains the past few days. I am scheduled for an MRI in the beginning of March, but am scared to death that by waiting, I may being getting worse without any treatment. I have to wait until next month due to insurance deductible being met...its EXPENSIVE to be sick! Researching over the past few days, I am torn at seeing information that sounds so much like me pointing to MS, part of me happy(?) to possibly have a diagnosis, and part of me terrified of what having MS would mean. Anyway, I wanted to post, because maybe people who are reading this know the boat I am in...as its really tough to explain to people who aren't in the "been there done that" category.
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hackwriter responded:
Dear EM,

I know what you're going through, waiting for a dx is the toughest part. It will be a relief once you know for sure. And being scared about your future is normal, I was terrified for the first three years after that initial attack. But I got over it. Life doesn't end, it's just a series of adjustments. Finding a support source like WebMD helps a lot.

I waited for six years after my first attack for a diagnosis because I had not met all of the criteria. That was six years without treatment. I don't know if it made a difference, though, I have a feeling it didn't. My second attack happened five years after the first one, I was stable all that time without treatment. Of course, the inflammation is still occurring even if we are not symptomatic or in a full exacerbation. But it's impossible to say whether I would have flared after five years even if I'd been on treatment. After I started Copaxone, the next flare happened five years later. So, with or without treatment, my pattern is still one flare every five years.

Some docs will diagnose Clinically Isolated Syndrome (CIS) when a patient shows signs of MS but has had only one flare. This is one way to start a patient on MS therapy without a diagnosis--but not every neuro will do this.

I hope you'll get some answers in March one way or another. Please let us know.

Kim


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