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Thread: I have petrified myself ALS help me

  1. #21
    Join Date
    Mar 2011
    Posts
    672

    Re: I have petrified myself ALS help me

    That is a nice link. I use the forum at www.aboutbfs.com very insightful.

    I have had BFS for nearly 2 years know and for me it is nonstop action in my calves just have to live with it and understand even though it can present like it could be linked to als, It is a totaly different thing as it says Benign.

    One day it would be nice not to see my muscle's twitching/spasms looks like popcorn popping all the time and feels like snake's under the skin.

    But thats life.

  2. #22
    Join Date
    Aug 2012
    Posts
    322

    Re: I have petrified myself ALS help me

    both very helpful and interesting websites..

    I have some of the symptoms described in the second one left by xtremx

    __________________
    Lucy

  3. #23
    Join Date
    Jun 2011
    Posts
    264

    Re: I have petrified myself ALS help me

    When I discovered fasciculations on my calves I was petrified just like the OP and started checking behaviours that involved strength tests and exercising my calf muscles. I was even more frightened whenI found that I could do slightly more calf thrusts with my right leg than my left!

    After a couple of days of doing this several times a day my calf muscles were quite sore. After a week they were stronger, firmer - and identically so.... In the meantime I googled fasciculations and discovered aboutbfs.com. I didn't find it particularly reassuring though because it seemed to suggest that ALS would have to be eliminated following nerve tests. This idea scared me even more and set off all sorts of "What if....?" thoughts.

    It is an American site and there seems to be a culture within US healthcare that all serious illnesses need to be eliminated rather than simply assessing the risk of serious illness given various factors including signs, symptoms, age, gender etc.

    The good thing about the NHS/Lancashire Teaching Hospital link is that it suggests that further testsare really not necessary in most cases,

    "Neurophysiological examination (if required)....." That was a lot more reassuring.
    I went to see my GP and told him about them and my fears. He did some basic tests that included shining a torch into my eyes, some basic coordination tests, shook his head and said,

    "I don't think you have Motor Neurone Disease."

    He checked me for Carpal Tunnel Syndrome though because it runs in our family and suggested nerve conduction tests FOR THAT REASON ONLY because one of his tests, of my right wrist was inconclusive. He also said that the test was not a necessity so I declined it. Neurology was scary and I really didn't want to go there.

    This was March last year, so 20 months ago. The fasciculations come and go, they are more noticeable the morning after a few evening drinks or if I'm a bit stressed out about something. They don't frighten me anymore.

  4. #24
    Join Date
    Mar 2011
    Posts
    672

    Re: I have petrified myself ALS help me

    Hi jules147, Your post reads alot like how I was, I was always doing the strength tests you find on the net, untill it made my muscle's ache more than normal.
    I was also measuring my calve muscles most days looking for wastage sounds extreme I even took photos of them to compare every week.

    But like you said the GP will do some basic tests at the office that will be very helpful and should calm the fears.
    And like you its been nearly 2 years with this constant fo me and I'm still here

  5. #25
    Join Date
    Aug 2012
    Posts
    322

    Re: I have petrified myself ALS help me

    It is nice to know that people have the same fears although I wouldn't wish them on anyone of corse.

    My twitches are certainly worse the day after a heavy night ant the more I concentrate on them the worse they get and other symptoms appear. As I am rather young and have had many illness fears with no outcome I will just Try and remove it from my mind.

    I see a neuro in january for migraine anyway so if it's worse or still bothering by then I'll mention it
    __________________
    Lucy

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