Tuesday, June 23, 2009

I think it's time I faced my biggest fear

I've been told repeatedly that what is wrong with me "couldn't possibly be mulitple sclerosis". Sounds good right?

But then I ask - but isn't that extremely hard to diagnose? True, they say, but you don't show any of the common symptoms. Sounds great right?

I don't have lesions that appear in my MRIs - which are fairly common in ms and a common way to identify it. Wonderful, right?

But, still a nagging thought keeps pestering me.

So, I'm looking into it. I do not appear to have one of the most common symptoms which is muscle weakness/paralysis ... however, I do appear to have the other eight most common symptoms of ms. Which does NOT mean I have ms - since symptoms are very general - and could mean lots of things. But, if they can't be explained by anything else? ms becomes a real possibility. And, my $50K in medical debt is proof positive that we've tried to rule everything else out.

One other "symptom" that makes it unlikely - is that I have several symptoms that come & go multiple times a day .... whereas ms symptoms tend to last at least 24 hours or longer -- but, if you look back at a chart of when I'm suffering from these symptoms - I tend to go several months of having episodes or several months where I don't.

Not having lesions in the MRI? Apparently 25% of ms patients don't get those in the early stages of the disease.

It's not that I think I have ms... so much as I'm afraid I *might* have ms. It was very easy to take at face value the statements "it can't possibly be ms"; be thankful; and try not to think too hard about it. I think I have to dig a little deeper and push a little harder for clearer answers as to why they don't think it's ms. Because eight out of ten symptoms does NOT seem like it should get ruled out without digging deeper.

I can't seem to find anyone in the area who specializes in ms... but I did get a name of a nuerologist who apparently has a photographic memory.... because if it isn't ms, it's likely to be some extremely rare and hard to diagnose condition... and I think I want to broach the subject along the lines of "prove to me it isn't ms".... if he can find another condition - great - at least then I can start treatment. If he can't but he can prove beyond a reasonable doubt that it isn't ms, even better. If that doesn't happen, perhaps then at least they can put me on some medication "in case it is ms" which would slow the progress if it is ms; and probably do no harm if it isn't ms. If it works - all the better, if it doesn't - doesn't that say something as well???

Just to make sure I'm clear - I don't think I have ms, and I certainly don't want to get diagnosed with it. But, I've got something - and dozens of doctors haven't been able to figure out what it is other than to pinpoint that they believe it's something nuerological. I'm getting worse and their only treatment at this point is to put me on an anti-depressent. I'm just thinking that it's time to find out for certain it really isn't ms... so that the nagging worry in the back of my mind can finally be put to rest.

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