This Is MS Multiple Sclerosis Community: Knowledge & Support

It had to be the National Enquirer... maybe somewhere more respected will pick it up?

It's a good article.

LOL Cece.

I was hoping she had experienced more improvements. Bummer.

It's good press for the cause though.

website not available in the UK..

moose

i look at it differently: when you are in such a state, the ability to clear your own airway, to cough, to have enough power in your finger to move your electric wheelchair, to be able to sit up without falling over, to transfer yourself independently to the toilet, to stay awake for the hour that your grandchildren are in your presence: these are profound improvements that do not show up on EDSS scores. To some this simply means no change in objective findings. But to that one individual they are grand successes that provide a modicum of dignity in an awful situation.

These do not show up as improvements caused by CCSVI treatment but they are, nonetheless, overwhelming triumphs. It is these little things that are not recorded in trials, yet they mean so much. Remember, as i am sure you will, to hold on to empathy toward those less fortunate than us

DrS

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Dr. Sclafani,

I agree the improvements you speak of are definitely a big deal and worth the CCSVI treatment.

However, my response in this instance, what I said and what I didn't say, had everything to do with having empathy for Annette and for PwMS reading this thread. We could be Annette someday. We all imagine the horror of being trapped in a state of mere existence. I don't think many of us like to think about the indignities and suffering that may come with progression (I think it's an unspoken rule here that we don't speak of progression past a certain point. It's kind of sad as it leaves a lot of people in need of support without an outlet. Maybe there should be a special forum for speaking about those issues without having to worry about causing anxiety in people who haven't reached serious disability).

I want Annette to be able to communicate...to be freed from her living hell. I won't stop wishing for unbelievable miracles for all of us.

(I do admit to sometimes lacking empathy...has more to do with being a clueless idiot than lacking heart.)

Her disability is so severe. A few years ago, I was coming to grips with my own fears about wheelchair MS, and I was introduced here to the concept of Bed MS. I don't know the word to describe where Annette is at but it's past Bed MS. I wish CCSVI treatment had been around in the 80s.

in the you never heard much about ms, never saw a commercial , nothing . it was kept hidden .