Blown away

Information about how to manage or reduce the severity of BFS symptoms

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Blown away

Postby TC on February 24th, 2004, 11:54 pm

I just found this site and registered after reading it for 10 minutes. Looking at the glass half full, just a quick thank you to each and every one of you for your postings.
Like most others here I searched a long time for information on these symptoms (have appointment with 3rd neurologist at U of Penn in March..ALS specialist) and tonight I have confirmation on almost each and every symptom from all of you(minus the muscle WEAKNESS-thank God).
I 've had this thing for almost two years and this is a HUGE breath of fresh air. Only wish I had found this site sooner.
Thanks,
Tom
(P.S.- My first posting..hope this works..)
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Postby sarahtonin on February 25th, 2004, 4:37 am

Hi Tom

Glad you found us eventually! I know how reassuring it is to finally "meet" others who know what you're going through.

Tell us a little more about your symptoms - what was the outcome of your previous neuro visits?

Sarah
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Postby thetwitchkid on February 25th, 2004, 8:55 am

TC

Welcome. Sorry you are here, but it beats the other sites. BFS support can be great ! Tell us your story.
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Postby TC on February 25th, 2004, 8:35 pm

Thanks for the words of encouragement.
Well, in Sept. of 2002 the fasiculations just started-infrequently at first and mostly in the thighs, but after about a month they became very prevalent in muscles I never even knew existed. I went to my doctor who referred me to a neurologist. It was very frustrating because during the EMGs, whenever he stuck a needle in my calf, my arm would twitch and vice versa. Thus he never found anything. After a month of tests he concluded it was just due to physical stress because I work out so often.
For the next year I just put up with the twitching and it actually went almost completely dormant for about 8 months-almost.
Then during this past December they came back with a vengeance along with new symptoms: severe muscle burning in my calves, severe soreness in my palms and feet, and one symptom that "Uber" asked about: involuntary muscle movement. This occurs especially when I'm going to sleep or sitting still-my leg or hand will just "jerk" very quickly for about a tenth of a second. I stopped working out altogether but my soreness did not subside. The latest neurologist specialized in MS and told me it wasn't that but that I should be concerned about ALS. So now I have an appointment with an ALS guy in March. (hoping that due to no weakness, that I'm OK).
There's one thing I've always wondered about: In 1999 I was diagnosed with Lyme disease after finding the infamous "bulls eye mark" and blood tests came back positive. While it was caught very early and I received the full dose of antibiotics, could this still have been a cause??
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get treated tc

Postby eric on April 5th, 2004, 8:36 pm

lyme can always come back!
you need to go to dr who is lyme literate.like dr burrascanno or dr iwer
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Postby eric on April 5th, 2004, 8:37 pm

TC wrote:Thanks for the words of encouragement.
Well, in Sept. of 2002 the fasiculations just started-infrequently at first and mostly in the thighs, but after about a month they became very prevalent in muscles I never even knew existed. I went to my doctor who referred me to a neurologist. It was very frustrating because during the EMGs, whenever he stuck a needle in my calf, my arm would twitch and vice versa. Thus he never found anything. After a month of tests he concluded it was just due to physical stress because I work out so often.
For the next year I just put up with the twitching and it actually went almost completely dormant for about 8 months-almost.
Then during this past December they came back with a vengeance along with new symptoms: severe muscle burning in my calves, severe soreness in my palms and feet, and one symptom that "Uber" asked about: involuntary muscle movement. This occurs especially when I'm going to sleep or sitting still-my leg or hand will just "jerk" very quickly for about a tenth of a second. I stopped working out altogether but my soreness did not subside. The latest neurologist specialized in MS and told me it wasn't that but that I should be concerned about ALS. So now I have an appointment with an ALS guy in March. (hoping that due to no weakness, that I'm OK).
There's one thing I've always wondered about: In 1999 I was diagnosed with Lyme disease after finding the infamous "bulls eye mark" and blood tests came back positive. While it was caught very early and I received the full dose of antibiotics, could this still have been a cause??

yes
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tc please call me!

Postby eric on April 9th, 2004, 11:48 am

I have a dr apointment with dr burrascanno on the 19th of april I want you to take it because you need to be seen, i am already bieng treated.
call 516 314 2604 my name is eric also make sure you know that they charge 750 dollars. call now and you will be 1st.
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Postby SusanSid on April 11th, 2004, 12:40 pm

TC,

I just want to say that if you've had these symptoms for this long, I think ALS is pretty far out of the question. I don't understand why a neurologist would say it's not MS but be worried about ALS. What a jerk, if you don't mind. If he's a neruologist he should be able to make a diagnosis and not scare the heck out of you with that comment. That's unreal.
Your symptoms are classic for BFS and I've had them all and more. Please don't get yourself all worked up over this. I hope this new neurologist has a better bedside manner.
Sue
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sorry but you did not call

Postby eric on April 13th, 2004, 4:35 pm

i had an appointment with dr burrascanno and i was going to give it to somebody else but noone called . oh well I now going to keep the appointment.
I tried!
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Postby TC on May 11th, 2004, 8:07 pm

Eric,

Nice speaking with you and thanks for the contacts. I'll let you know how I progress.

Tom
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