This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear gang...
There's been a lot of arguing and cussing and general carrying on. I just wanna say, it ain't helping anyone.
1. Take that energy and get the research to doctors. Print it out and bring it to local universities, interventional radiologists and vascular surgeons. They will get it tested, do the research, treat the patients. Don't worry about Oprah, Montel, Terri Garr, etc. Celebrities are not going to change the dialogue. Doctors will. The press will follow when there's more evidence.
2. Take that anger/cussing energy and join a local group. Look on Facebook. Search CCSVI and see if there's a group near you. Meet other MS patients. Don't waste your finger power arguing with the same ol' people on here. It really doesn't matter. Meet like-minded MS patients and caregivers.
3. Make Jimmy's life easier. She doesn't want to read your trash talk and have to break up weirdness. Let's step it up a notch. OK?
AC --the aging cheerleader.

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

point well taken. guilty as charged. i have been takeing the research papers to dr.'s etc. trying to get people interested. i'm sure others have too. the last vascular dr. was supposed to get back, gave him plenty of time then i called him the other day he was suposed to call me back haven't heard a thing. a lot of us are at a stage of ms that even this is so difficult and a lot of us are alone trying to do this. would have been hard to travel last yr. when i first heard of this and now even harder. when you know that you should be able to get this testing and treatment within a stone throw of where you live and the treatment and attitude of some of these dr.'s you experience it is beyond frustrating. i think that is why a lot of us feel that if it would hit the news like in canada then more people would be out there approaching these universities etc. then to top things off people can't dare put it on line if they find a dr. to help for fear he will be shut down or punished. it's not like we're fugitives. but i will keep plugging away like the others and hope this can happen before it's too late for a lot of us. maybe it already is but i'd like to try. maybe someone should start another site for frustrated,tired,angry near their wits end ms people. so when we try to do all the right stuff and feel like you've been kicked in the teeth there is a place to just vent. some of the curse words that have come to my mind after first feeling hope and now having to fight the system would probably melt your computer. but, this site is good and informative and i hope i read real soon--there are well trained testing and treatment facilities. in the meantime i'll hope ccsvi alliance and some of the others get going strong soon. your husband got treated and is doing well and you could have just forgot the rest of us and you didn't--for this i am grateful and you have earned my respect. thank you.

Very well said.

Avis Favaro is the exception here...

Weirdness is the right word for it. I can't believe some of the stuff that people have been posting to one another here!

Please, let's just stop. Cold turkey.

People are stopping by here from all around the world, looking for info on CCSVI-- and if we want the research to be taken seriously, we need to be respectful of each other. honestly.
cheer

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

.

Does the person who posted something have the ability to delete it? That would seem to be the thing to do -- the person who posted such nasty (and more important - irrelevant things) could delete them.

Also, could people break postings into shorter paragraphs? Some MSers (like me) find it difficult to read really long paragraphs.

Hi Cheer,

Thanks to fate, my recent experience here led to the inspiration of a small idea that might help generate some much-needed funds and press coverage for the cause of CCSVI.

And this thread of yours, Cheer, is a way I can pitch to you my idea to see if you like it, know what to do with it, know if it's a good idea or not, etc. I had been wondering how to get in touch with you!

I would like to help in any way I can, and since my ways are very limited these days, I'm always excited when, from out of the clear of a very blue sky, an opportunity to give back suddenly appears as if it had been carried to me on its very own special sunbeam.

My idea involves having my brother be a voluntary guest speaker at a CCSVI fundraiser in the NYC area (or Albany area). He gives fantastic presentations all over the country to all types of groups all the time. He could start his talk with some remarks about any of his past police cases (or by giving a full-blown Power-point presentation w/wo Q&A after).

Then he could talk about the different ways that mental health issues can affect families (with firsthand accounts) and how most MS patients (and their families/caregivers) will face these issues at some point in their life (it's a presenting symptom in ~10% of cases). My brother is part of my crisis team.

If any doctors happen to be there, my brother could wrap up his talk by thanking them for helping (I envision a spot light on our good doc with a special TIMS' round of applause).

To generate interest, I'm picturing a special flier put on the bulletin board of every single police precinct throughout the entire city... I do happen to have an idea for something to go on the flier to help *grab* the attention of police officers.

I'm really just trying to brainstorm right now... sadly, I cannot offer to do much else, although ten years ago, I would have been all over something like this. The fundraiser would need to be planned by others (are any already planned?) The flier would have to be designed by others, etc.

BUT, I can still pick up the phone to call my brother.

If you get a chance, could you give me your input/ideas?

If this post does nothing other than to let you know that you and Jeff are in my and my family's thoughts, then my time typing this post has been well worth my effort.

Warmly,
~Pam

EDIT: I may have worded the above improperly, and to avoid any confusion whatsoever: My brother NEVER accepts fees of any kind for anything he ever does related to criminal work, NEVER.

Very well put Cheer and timely. I am going to try and get a referal next
week from my GP. Wish me luck as he is friend with neurologists in the clinic of Dr Freedman's group. I will print papers for his education on ccsvi and I want him to visit this site and see the nice results for the many people who underwent the procedure.

Take care All


Norm

_________________
In a perfect world, my Neuro would like to be a vascular specialist.
'92 diag RR - '05 SP

Cheer...you have a great gift in that you are able to round us up and put us back on track when it's needed. And sometimes it's needed

mmcc...good to see you here! I agree, I often chose to ignore posts that aren't broken up into bits rather than go to the trouble to copy/paste and break it up myself. I sometimes think I'm missing something important, and may well be... So please...break up your posts into paragraphs at least.

Norm...the best of luck to you! I've been "denied" referrals lately and am trying to figure out what is the best course of action now...

Lyon...thanks for chiming in here. It means a lot.

be well all,
Hope

_________________
-----------
Dx March 2003
Avonex

Hi Blossom,

Bravo!
Your post is wonderful, and you covered our struggles *perfectly*
Thank you so much for putting so many of our frustrations, fears, anger, and bewilderment with the "system" into words. I think my computer has heard just about every swear word in existence... in two languages!!

Warm greetings,
~Pam

~~~~~~~~~~~~~~~~~

Hi mmcc and Hope,

I have the same problem reading large blocks of text, but my neuro-ophthalmologist doesn't understand when I try to describe what happens to my vision... a varying mix of any of the following:

11 different eye problems: ON, loss of color vision, moving tunnel vision, blind spots, blinded by bright lights, eye PAIN in eye, eye PAIN behind eyes, blurry vision, Uhthoff's syndrome... I forget the others, lol.

I often don't use paragraph breaks when my thoughts are coming clear and fast, like blossom's here...

Warm greetings,
~Pam

~~~~~~~~~~~~~~~~~

[suggested paragraph breaks by my daughter, if you'd like to use them.]

point well taken. guilty as charged. i have been taking the research papers to dr.'s etc. trying to get people interested. i'm sure others have too. the last vascular dr. was supposed to get back, gave him plenty of time then i called him the other day he was supposed to call me back haven't heard a thing.

a lot of us are at a stage of ms that even this is so difficult and a lot of us are alone trying to do this. would have been hard to travel last yr. when i first heard of this and now even harder. when you know that you should be able to get this testing and treatment within a stone throw of where you live and the treatment and attitude of some of these dr.'s you experience it is beyond frustrating.

i think that is why a lot of us feel that if it would hit the news like in canada then more people would be out there approaching these universities etc. then to top things off people can't dare put it on line if they find a dr. to help for fear he will be shut down or punished. it's not like we're fugitives.

but i will keep plugging away like the others and hope this can happen before it's too late for a lot of us. maybe it already is but i'd like to try. maybe someone should start another site for frustrated,tired,angry near their wits end ms people.

so when we try to do all the right stuff and feel like you've been kicked in the teeth there is a place to just vent. some of the curse words that have come to my mind after first feeling hope and now having to fight the system would probably melt your computer. but, this site is good and informative and i hope i read real soon--there are well trained testing and treatment facilities.

in the meantime i'll hope ccsvi alliance and some of the others get going strong soon. your husband got treated and is doing well and you could have just forgot the rest of us and you didn't--for this i am grateful and you have earned my respect.

thank you.
.

thank you happy poet. for awhile i thought i might be tarred and feathered ONLY KIDDING!! let's hope soon everybody will be posting HEY I JUST GOT LIBERATED AND I FEEL SO MUCH BETTER!! you know i was thinking how frustrating it has to be for these dr.'s that have the brains and the integrity to put theirself out there for us and then be told to stop because of what reason??? gee, they are actually helping people with ms-- is that a crime??