csf myelin question.....

[Geo]

Cindy ,Have they looked at Post Polio Syndrome or Neoplastic Syndrome (precursor to Cancer, Usually Metastatic Type ) Did they Test you for these ? or MMN Multifocal Motor Neuropathy . Geo

 

[MICHELLE40f]

cindy......

I hope you find answers soon!It doesnt seem like ALS to me,which lol I dont claim to know much,but something I do know is that it doesnt sound to me like you are doing so great,some people seem to forget that other illnesses that affect peoples lives with weakness,loss of energy,etc,etc,,,,are not so great to them,just because als is sooo horrible doesnt mean others dont suffer with illness and life style changes also.... goodluck{{{{{{{{hugs}}}}}}}}michelle

 

[sral]

Michelle,

Very well said! Because some of us are living our own personal nightmares everything else looks good. But if you're living the 'everything else' regardless of whether it's better off than having ALS, it's still sucks.

Thanks for that refocus Michelle.

 

[MICHELLE40f]

hi

you are quite welcome sral,was just a friendly reminder that we all suffer in different ways. I sure hope your mom has as little suffering as possible,you seem like a really great daughter!{{{{{{hugs}}}}}} Michelle:-D

 

[CindyM]

Well, I am still working full time, (barely) and I still drive (an exausting but still-possible activity) so I guess in the grand scheme of things I'm not too bad! :-D I did trade in a very active life for watching TV and knitting, but somedays those old knitting needles are too heavy, LOL.

Last night was my turn to moderate book club, and trying to lead discussion over six very animated women caused me to lose my breath a few times. Today my lungs feel as if I was jogging.

And yes- they ask a lot about polio, which did rip through our neighborhood but the little girl a few doors down was the only one to get it, as I remember. My grandmother always complained about weakness and exaustion, but her children always whispered that she was making it up. Now, when I ask my surviving Aunts and Uncles about her health, they maintain it was all in her head. She lived to her mid-seventies, so whatever it was it did not shorten her life very much. I am glad my doctors and people in my life (most of them) take me seriously.

And I am very glad for everyone here! You guys are great! :-D

 

[Al]

Yur just sayin that to make us all blush Cindy.

AL.

 

[Geo]

Folks in those old days didnt have health care ,so alot of them yes said its in her head , or would just say they cant help me anyway so why try . Truth was they couldnt afford health care . Thats back when Doc.s came to the house . Geo

 

[strikeout]

Just found this thread, so I'm responding now.
Geo and CindyM - My husband went to a post polio syndrome clinic. We found out that back during the polio epidemic many people contracted a very mild case of polio and never even knew it. It is possible that these could be the people who now suffer from chronic fatigue (Epstein Barr), fibromyalgia and/or muscle weakness. As with ALS, there is no test for Post Polio Syndrome.