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AngelManFL

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Joined
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Messages
98
Diagnosis
11/2007
Country
US
State
FL
City
Tampa Bay Area
Hi to all, and thank you so much for all you support...

I did read another thread on this topic - but I was wondering if there could be any other ailment or reason that causes this. Back in January I weighed 210lbs of mostly upper body muscle. Today I weighed 162. My back has taken the largest toll, I used to have that V shape and now I feel like a skinny 15 year old... My Lat's are completely gone, my shoulders are all bones and you can feel and see my ribs better in my back then in the front!?! Of course this also is where my severe pain is also, my back and along my spine. As some of you may know I am already in a wheelchair full-time, unable to walk the 8-10 feet to my bathroom if necessary - this is due to the absolute weakness and loss of muscle in legs(mostly from the knees down). My feet do not look anything like "MY" feet! I wore a size 10 EEE all my life and now the feet that are attached to my ankles are just scary to look at, at least for me! It is hard to believe they belong to me, there skinny, thin and all tendon looking rather than any muscle and my toes tend to curl downward. I once had FANTASTIC calves that everyone envied (but that was just genetics and a lot of cycling as a kid), even my mother said they looked scrawny to me today... My hands and forearms are beginning to take on that 'all-tendon' look now also..

Honestly I am not sure what my actual question is - but is there anything I can do to slow this process down? I no longer have the strength to even use the small 5lb weights - I drink 2 heavy protein shakes (23 grams each) a day now, I just feel helpless and like I am just withering away - there has to be something to stop it. They are trying to move up my MAYO appt(now 1/21/08), to something this month... and with the breathing issues on top of it all - It is difficult to keep the fear away..

Any input would be greatly appreciated, since there is not a single Dr in my area who wants to give me Dx - All agree with one thing - I need further study at the Mayo Cllinic..

Thanks for listening..
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
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Mike 27 posted his vitamin regimen in his blog. He's doing not too bad. Can't hurt to take a look.
AL.
 

Marjorie R. Wilcox

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Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
to Don

Hang in there friend! You have come to a great place for support and comfort, for sure. This ALS forum really helps my husband (with the ALS) and me. You don't have to be reminded that this is "the pits" but keep telling yourself you will manage somehow. We all do whatever it must take to get by. I can say that reading your message drew me to tears with compassion. Know you aren't alone in all this. Try not to borrow trouble. Every case is a little or a lot different. Thank you for being in this forum with us. Please keep writing and we will look for you. M
 
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