Discussions By Condition: Medical Stories

driving miss daisy around the bend.......

Posted In: Medical Stories 2 Replies
  • Posted By: flippingWilson
  • December 9, 2008
  • 03:48 AM

I have always felt different, from a very young age I knew something was wrong with me. My sister and I inherited a disease a very rare disease, (so rare that at forty-four I still don't know exactly what it is I suffer from,) it effects our circulatory system, grab a hold of something and apply force, that muscles or muscles will stay seized even when my brain tries to send it the signals to release. The effects f this disorder is all encompassing(sp?)
It effects every muscle in my body, running or skating in earnest will just seize my legs entirely, if they are bent, I'm on the ground if I have remained up right I just have to stand there until they relax enough to be used, do it again and I'm finished for quite some time and half to be helped.

This disorder has effected the proper function of my brain as well, total lack of concentration, personality disorders, etc, etc..... Until just recently my sister and I discussed the symptoms, (compared) As it turns out my problems have been far greater than hers. My panic and anxiety, my ability (or for that matter my inability,) to perform basic exercises, such as running for any real distance, using a hammer, anything that requires the exertion of a muscle or muscles.

No point in going on, at this stage I am doing everything I can to stay positive, it has become so depressing, (not having the medical profession take me seriously,) I have become a total shut in, haven't worked in a year the long and short of it is, I have gone away from my family base with the understanding I would commit slow suicide on myself by not eating properly, etc, etc.... I am not using drugs and I do not drink, this disorder has been that effecting, it has truly dragged me some where I never thought possible....

I won't go on, in fact I truly don't have the energy to reach out, my last ditch attempt was to get the internet hooked up so I could at least spend my time trying to find some kind of help...... and a simple diagnosis is all I need I think to find some light..... Please, is there anyone out there that has anything to suggest?

steven (vancouver island, bc.) thank you all for reading my thread.

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2 Replies:

  • Steven,I was very moved by your post. I don't know the name of your condition, but there must be a diagnosis for you. You and your sister can not be the only ones in the world with this condition. If you find out the diagnosis, there might be a treatment. Unfortunately you will have to do your doctors' work, while they prefer the golf course. Try to look at PubMed (maybe something with muscular fibres?), post your story on diffrent sites like WrongDiagnosis and don't give up. And post again and tell us what's happening! Good luck!
    Felsen 510 Replies
    • December 13, 2008
    • 11:43 PM
    • 0
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  • I have always felt different, from a very young age I knew something was wrong with me. My sister and I inherited a disease a very rare disease, (so rare that at forty-four I still don't know exactly what it is I suffer from,) it effects our circulatory system, grab a hold of something and apply force, that muscles or muscles will stay seized even when my brain tries to send it the signals to release. The effects f this disorder is all encompassing(sp?)It effects every muscle in my body, running or skating in earnest will just seize my legs entirely, if they are bent, I'm on the ground if I have remained up right I just have to stand there until they relax enough to be used, do it again and I'm finished for quite some time and half to be helped. This disorder has effected the proper function of my brain as well, total lack of concentration, personality disorders, etc, etc..... Until just recently my sister and I discussed the symptoms, (compared) As it turns out my problems have been far greater than hers. My panic and anxiety, my ability (or for that matter my inability,) to perform basic exercises, such as running for any real distance, using a hammer, anything that requires the exertion of a muscle or muscles. No point in going on, at this stage I am doing everything I can to stay positive, it has become so depressing, (not having the medical profession take me seriously,) I have become a total shut in, haven't worked in a year the long and short of it is, I have gone away from my family base with the understanding I would commit slow suicide on myself by not eating properly, etc, etc.... I am not using drugs and I do not drink, this disorder has been that effecting, it has truly dragged me some where I never thought possible.... I won't go on, in fact I truly don't have the energy to reach out, my last ditch attempt was to get the internet hooked up so I could at least spend my time trying to find some kind of help...... and a simple diagnosis is all I need I think to find some light..... Please, is there anyone out there that has anything to suggest? steven (vancouver island, bc.) thank you all for reading my thread. http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=141 Come on over and check out b12 deficiencies. They can be pretty weird sometimes. I have had some muscular problems like that at times, but only sometimes. It's not a sure thing but might be contributing.
    Freddd 3576 Replies
    • December 23, 2008
    • 11:50 PM
    • 0
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