This Is MS Multiple Sclerosis Community: Knowledge & Support

http://nro.sagepub.com/cgi/content/abstract/14/3/235

I've mentioned before that Jeff's first signs of his MS progression- which began 15 years ago, although he was only diagnosed 2 years ago- were depression, a lack of interest in socializing, bad sleep patterns and fatigue. Since his stenting procedure he is more social, more energetic, happier, sleeping better (no more SNORING, he is now a quiet sleeper.) He feels reborn.

It breaks my heart to read the general thread stories of depression, sleep disturbance, fatigue...afflictions that are not as apparent as a loss of motor function, but are no less crippling for a human being. Jeff was a 1.5 EDSS before his procedure, but there was no way to measure how MS/CCSVI had changed him. In retrospect, we can see what he had lost, and now what he has gained.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

It's like I said in my blog, the EDSS is like using a cinder block instead of a flyswatter to kill a bug. Mel was not working. Jeff was working, but it sounds like he was working and surviving, not living. The impact to one's life is what matters. I have not been depressed, so even though it was hard on me physically, I still was doing things that I liked; even though it hurt . So I couldn't walk as far as Jeff, but I could, and wanted to, go out and be wtih people and do things that made me feel better. So when the things you love to do no longer matter, how is that less debilitating than needing to sit more? Interesting thoughts come up when you think about this and finally realize that the scale is fatally flawed, even though I can't come up with an alternative anywhere.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com

Hey Lew I think the scale is for measuring the accumulated loss of mobility not so much for fatigue, brain fog, wanting to socialize and stuff like that even though that can also be a disability I guess.

_________________
Had ms for over 19 years now.

I agree completely. However, I think there should be some sort of quality of life index as well, but I have looked a bit and can't find anything. But I do think you're right; that that's what it was created for. I guess it is solely a scale for the physical, so I have to agree with you since it's obviously important for a doctor to 'value' our disability somehow and to be able to measure it.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com

My hope is that when folks show up at the docs with depression and fatigue, a vascular scan will become part of the protocol....not just a script for some antidepressant. Someday...

They do have QoL tests, Jeff never took one. There's no better/worse kind of MS. It all sucks. And being immobile is certainly going to depress anyone, even a saint. Said it before, say it again. You guys are my heroes...that's why I ain't quittin'.

I thought it was interesting to see how hypoxia- a lack of oxygen and cellular death -could change someone's personality...and set the neuroimmune system into action.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Mel was the same.

1.5 but that isn't the whole story.

Not playing MS top trumps but there are lots of ways life gets smaller.

Actually Lew, Mel was working but that's ALL she could do.

She was either at work or asleep. I am not exaggerating.

Interesting on better sleep and no snoring (even if not suffering from sleep apnea).

Sleep apnea obviously also hampers my brain's need for oxygen. I am helping by using a CPAP machine.

bump

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS