Monday, November 16, 2009

Am I alone?

I know that it hasn't been that long since I was diagnosed or that long since I've started on MS meds.  I find myself thinking and wondering if various symptoms I have are MS related or just unrelated stuff that I've had for some time.  I've read a lot online, and realize a lot of what you find online has to be taken with a grain of salt.  But I do wonder about what's next or what to expect.  From what I read, I'm lucky.  I'm not seriously impacted, I have some annoying symptoms but I  can live with that.  From the way my Dr talks that may be all i have for a long long time.  He seems to think that today's newly diagnosed patients aren't as apt to suffer all the severe symptoms and disabilities as those that have had the disease for a long time, and/or haven't taken any of the meds to prevent things from getting worse.  yet, I don't find anyone like me online.  maybe that is because the ones that are writing blogs and sharing their stories have more to say because they are more affected.  maybe the people like me are busy living their lives and working and don't have the time or energy to share their stories.

I understand that no two people have all the exact same symptoms - this is a very varied disease that impacts each one of us differently.  So for now I just count myself lucky.  I don't seem to be bothered by extreme heat - at least not completely.  We have a hot tub - that we just put in within the past 3 years.  I love it.  It is great especially for my arthritic knees.  But now I see that so many MS patients can't tolerate hot tubs etc.  that it can flare up symptoms etc.

The only time the heat bothers me is that when it is a very humid day i feel very lethargic.  Also there are times when i "over-heat" and just suddenly get drenched with sweat.  I always figured that was a hormonal thing.  And maybe it is.

I've talked to a couple of "peers" - people that also have MS that take the same meds I do, and have found that very helpful, but they have had MS for at least 10 years or more.  I have officially had it only a month or two.  So they aren't like me... which comes back to the "am I alone?"


Lisa Emrich said...

Welcome to the MS blogging community. Sometimes it does take some time to find folks who seem to be in the same situation as ourselves. No matter what our personal situations are, individuals throughout the community are wonderfully supportive and kind.

Thanks so much for letting me know about your blog. I look forward to reading more.

Gwendolyn said...

Hi Dreamer!

Lisa is so right. I was diagnosed almost six years ago and I still haven't found anyone who is quite like me either. But everyone that I talk to is so open about discussing everything, I don't feel alone at all!

The heat bothers me only when it comes out of nowhere. On a hot summer's day, I'm fine, but if the temperature has been lower and it gets warm quickly, I have to take a break.

Welcome to the community!