One year and counting

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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One year and counting

Postby twitching man on May 19th, 2004, 11:50 pm

well I just hit the one year mark, i can't believe it has been one year since my muscles started flipping out. istill have twitches although not nearly as much. Tongue twitches have just about stopped, feet and calves still twitch the most, I don't have near the amount of cramps and muscle pain I would say that it has reduced by at least 80%. Still get fatigue although now it only comes when I try to exercise. I would get it before without exercise. Joints still bother me the most. I get tireed every now and then like I just want to sleep. Have gained about 10 lbs and my feet still bother me quite a bit I found out I have bad pronation. After all this and the Dr visits and the test, I still find myself falling into the fear catergory every now and theb. I will have something new come some new pain or sore body part like a shoulder or ankle or something like that and right away I go back to some of the stories i read about on the internet, i read those before I found this site. Anyways I guess I would like to know how all of you have gotton over the fear. Let me know.
PAUL THE TWITCHING MAN.
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Postby garym on May 20th, 2004, 9:52 am

Paul,

I'm glad to hear that you are feeling better! As for handling the fear, I would venture to guess that everyone on this board still battles that a little. I know i do.

Happy for you,
Gary
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Postby tom.u on May 27th, 2004, 11:18 am

Hi all,

I am new to this site, but i find it very helpful. I have an appointment with the neurologist and from what the doctor says, and the sympton i have read about, it sounds as though i have BFS.
My twitches started over a year ago, at first they freaked me out, but now i am use to them and until recently i kept it to myself. If it is BFS i have got, i will be relieved to find out what the hell is going on with my body!

they started in my buttocks, moved to calfs and then arms, and face. The most annoying ones are on your face, it has a habit of making me self conscious

One query i do have is the relation between BFS and 'generalised fatigue' which i have been experiencing. any info would be greatly appreciated. When the twitches started i was going through a stressful period in my life and i believe that is the cause of them. They are an annoyance and as soon as i am diagnosed the better, i cant believe i have lived with it for a year, worrying what the hell it was!
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5 years

Postby SLL on June 7th, 2004, 2:50 pm

Ah, the fear...so here I am - 5 years later with this - in the throes of it again. It is strange, put it largley out of my mind for very long...and then I read an article about the passing of Jennifer Estes, the Project ALS founder, who died in December after 5 years with the disease (diagnosed when she was 35 after weak twitching legs sent her to a doctor)...I got all upset and went right back to the old "I have ALS" days. I went to the neuro again - normal exam. Insisted on an EMG. Got it, but felt he did not do "enough" (listen to me He is THE Medical Director of the MDA/ALS Clinic here in San Fran)...so I am still in a tizzy. Go figure....I think it will just take some time again.
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Oh no

Postby dont on June 7th, 2004, 2:55 pm

This is what kind of stuff scares me on here. You said she was 35 and had weak twitching legs when she went to the doc. So she was twitching when she presented. I hope and pray and am assuming she had clinical weakness on exam. I think I am weak but my neuro doesn't. Don't know anything about her so don't know but I do know one thing her case was obsviously rare being she was 35 and FEMALE! which is my age and it takes me back to my stupid theory of being a slow progressor and that I'm in that 6.7 percent who twitch first. It seems like a lot of people are posting about females lately too. Young ones at that. The fear never ends. I hate that this has happened to me because it's happened to my daughter too not just me. I wish I could let the fear go. I try to say to myself everyday that I can't do anything about it if I have it anyway so why should I let it ruin my life but then when I twitch and have that perceived weakness my mind starts ruminating all over again!
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To dont

Postby SLL on June 7th, 2004, 6:16 pm

Let me help put a bit of fear to rest. i have heard Jennifer's experience was that within 1 month of going to the neuro, he told her it is probably ALS. She has also said that when he asked her to sit on the floor and get up on her own, she could not...so I belivee her exam was not normal and was cause for concern. But remember, she was weak - said she was tripping, falling, etc... in addition to the twitches. The day she decided to go to the doctor she said she had a terrible experience that morning where she could literally not "make her body work" AND she was a slow progressor...lived 5 years with the disease.
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Pretty much over the fear

Postby DCGuy on June 9th, 2004, 6:25 am

It's been about a year for me as well, and I can say the fear is pretty much behind me. With reduced twitching and continued strength after a year, ALS seems unlikely if not impossible.

For me, thinking about the odds helps a lot. If 1 in 100,000 get ALS every year, and a small percentage (5-10%?) manifest twitching as an early symptom, that reduces the odds to over 1 in 1 million. The odds of getting killed by a car in the street are probably higher than that every year, but we don't live in constant fear of getting run over!

It also helps to trust doctors as the educated professionals they are. They study these diseases for year, and see actual ALS patients in their practice (though probably not often!), and yet we sometimes think we know more than they do about neurological disorders, despite the fact everything we know is from surfing the Internet for a few hours and reading posting from freaked-out people like us.

I wish you the best of luck putting the fear behind you. The way I look at it, how lucky are BFS'ers, thinking we have 2 years to live, and then realizing we have our lives back and will probably live a long & healthy one!
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Pretty much over the fear

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