Thank goodness for this site

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Thank goodness for this site

Postby sarah on December 3rd, 2002, 7:29 pm

Just found this site yesterday while looking at some neuro info site. I had no idea that other people have bfs and worry some much about other diseases (like als). Here's my story - I'll try to be as brief as possible.
Noticed my calves (both) twitching in April 2002 - maybe even months earlier. Can't remember exactly when it started because I just sort of ignored it. Soon I noticed other parts of my body twitchings, like arms, theighs, feet etc. Went to Dr. early June. Mri, Blood work, EMG a week later. All normal. My internist wanted me to see a neuro just to be sure, so I made an appointed for early October - everything fine. He went over my EMG and MRI and gave me a very extensive exam. Said I was fine and didn't need to come back. Now, I'm still twitching and my imagination is getting the better of me. You all probably know - maybe the Dr. was wrong, on and on...... I should also mention that my thyroid is totally out of whack. I had thyroid cancer 25 years ago, so I have no thyroid gland and take synthetic thyroid. Was on a dose of .175 for years and somehow either the pharmacy of my dr. goofed and since Octber 2001 I have been taking .3 (almost 2 times as much) of my thyroid medication. To make a long story short, my Dr. cut my dose in September to .05 and I ended up very hypothroid and feeling terrible. Still hypo after 6 weeks, so he just raised my dose to .1, and just last week, to .15. Anyway, I know that having thyroid problems can give you lots of symptoms (like cramps, tiredness, muscle problems, etc.) and I need to be patient and wait till I get on the right dose. In the mean time, I'm obsessing about having als. I still jog 2 miles every day and lift weight 3x a week. Why can't I let this fear go? Sorry to go on so long.
Sarah
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Postby Debbs on December 4th, 2002, 1:17 am

Hi ya sarah welcome to the site :D What fantastic news you have, all your tests have come back negative, Id be celebrating if I were you. Sarah you cant get much better than that, a clear Neuro exam and MRI and blood work so you can rest easy knowing that your symptoms are totally benign !! It is so human tho to keep looking for a reason for your twitching you are just the same as the rest of us bfs'ers I think it takes time to absorb the fact that there is nothing seriously wrong with your body, I do know that for me stress and anxiety enhance twitching so I control that thru eating right and getting rest and plenty of excersise, I could also recommend reading positive books and not looking up stuff on the internet that could plant negativity in your mind, hope that helps some.

Take care

Debbs
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Thanks

Postby sarah on December 4th, 2002, 3:37 pm

Thanks for the reply. Found this info on a web site and it has me kind of freaked. From all I've read on this site, you have weakness before the twitching. Now I'm starting to wonder. I wish someone here would check it out.

Thanks again,
Sarah
Here's the link to that site. The question and answer is about 1/2 down the page.
http://www.teleemg.com/anaconda/als.htm
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not reading that!

Postby jblack on December 4th, 2002, 7:54 pm

Sarah -- I think we've all read plenty of contradictory stuff on the Internet, and I think anyone hear can tell you that you won't have to search long on the Web to find something that will convince you have ALS. But your neurologist would NOT have sent you home without scheduling another appointment if he weren't confident that your situation is benign. There's too much on the line. He could have GREATLY reduced his own concern by saying "come back and see me in 6 months," or even "come back and see me if you need to." But he didn't -- why? Because he's NOT CONCERNED AT ALL.

I'm not going to read that page you just linked to, and I'd encourage everyone else not to either. It'll do nothing but make a bunch of healthy people worry. Sarah, I haven't had my doctor's appointment yet -- I'd sure like to have the assurances you've been given! Take advantage of them! Stop surfing the Web for ALS information, please!!!
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Postby Debbs on December 4th, 2002, 8:39 pm

I wont be looking at that link either jblack, been there done that and aint going back !!!

Debbs
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You're right

Postby sarah on December 5th, 2002, 12:01 am

Of course, you are both right - big mistake on my part. Thanks for pointing it out. I get this urge look for info on the web, mostly to reassure myself, but as you know you can always find something to worry about! I think from now on I should just stick with this site. Thanks for all you help.

Sarah
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You're right

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