The level of disrespect given by some of the folks on this forum is right up there with Neurotalk. Aren't we all trying to get to the same place? I mean I have watched from the sidelines and I understand the frustration of Chris. Everything he says the Lyon disagrees with him or tries to belittle him. No wonder he strikes first!! One of the reasons I've never posted on here is I don't feel like having someone save all my posts and then using them to try to discredit everything I say. What is this Washington?
I for one, and suffering from MS for close to 15 years now, have never seen someone get better who is not in the RRMS stage - Until I met Chris. This guy has spent the better part of 2 years fund raising, and making people as aware as possible of Revimmune - to no avail! So now he is getting better but no one else is. It weighs heavy on his mind knowing the only reason Revimmune isn't already a treatment is because of money, greed, and the same disbelief exercised here. I thought this forum was about hope until Chris told me otherwise.
I would kill for Revimmune or HiC or whatever you call it. I would also kill to try CSVI.
It seems the only people who don't understand these concepts are those who don't have MS. How dare you say the things you do when you don't have the disease? My kids don't understand what it's like to have this disease anymore than you who have spouses with this disease. It's our disease, those with MS, and we are sorry we drug our families into this mess, but it is our disease. To give any advice when you don't have the disease is stupid to me. I don't give advice on Cardiac conditions because my heart is fine. Why would you give advice on MS when your nerves are fine?
Well, even though Chris doesn't give a hoot if you guys see this, I think it's worth it because even though some of you don't want hope, some of you do and I hope this provides some for you. For the first time in 15 years I have some hope and nothing any of you downers without MS on this forum could change that.
And by the way...Chris is a devout Christian, will bend over to help anyone if he can, and is honestly one of the nicest guys you will ever meet. I wish my doctors were as reliable as him. I hope my 2 boys grow up to be half as good a guy as him, because my boys dad left around year 5 of MS and Chris is actually a good role model. He hates evil and loves good.
Sorry Chris but I had to finally stick up for you. I hope you see this because even though I tell you this all the time via facebook, you can't quit now because of a few sticks in the mud. A good deal of people experienced a great deal of hope from you and hope is worth its weight in gold with this disease.
Take care, John
- Family Elder
- Posts: 153
- Joined: Sat Apr 26, 2008 2:00 pm
- Location: Los Angeles, CA
Thanks for posting.
I am THANKFUL and GRATEFUL EVERY SINGLE DAY to have "met" Chris. While I never met him in person...I "knew" him through TIMS and his website....and because of that, I underwent HiCy (TWICE!) at Hopkins. And my life is, hopefully, forever changed!
I was going downhill FAST and with no brakes in sight...until HiCy. Now, I'm stable and well. Nothing can beat that.
I don't know what "drama" went down with Chris...but it saddens me to see that he doesn't come onto the boards or update his site anymore (I check every few months to see if anything new is happening).
So, did he do the CCSVI?
I hope he is doing well and that he continues to do well....I know he changed my life for the positive.
"As of tonight I received a letter from them stating all my progress over the last 9 months at JH has cost me my disability. They now say I am better and can go back to work. I am sorry but if anything good happens to me you will never hear another word."
"Keri you are a saint, watch out though that *&%$@ from that one forum (the airplane chic lol) will go after ya!"
"If you don't like me stating the truth do this.....When you see I posted something don't read it!Problem solved...I am only talking to those who don't need sugar coating. If you don't like what I say don 't read it." -Chris's advice to neurotalk
Your post is spoken like someone who doesn't know Chris at all.
Do you know how many people have gone to Hopkins or Rush to get rid of MS because of him? Did you know he is helping me, and others to pay for the time we need to be away from home? ( If I am accepted)
So did you know he knows people who have 0 MS symptoms after Revimmune? Did you know he got quite a bit better? Did you know except for one little flip, when he got sick with the flu last year, he has not progressed one bit and with PT he continues to get better?
So you say he is self serving? Yes he is. He is sick of the people who want help acting like the Republicans in congress. When he tells them something they don't want to hear it and then they attack him. They say No. They call him a liar. Point proven, look what happened when he reported what a doctor told him about CCSVI. He knew the results were skewed because of CIS and CDMS people. He also knew they only looked into 2 of the 5 specs for the CCSVI. Yet you people attacked him - one specifically. Did you know he emails has a going relationship with doctors from Johns Hopkins in Baltimore, Rush in Chicago, Jacobs in Buffalo, and Anschutz in Denver? He has conversations with them via email regularly.
I find it shocking that after Lyon called Chris' family every name in the book - his wife and dead grandfather wasn't even off limits, posted pictures of him with Bobcat Golthwait, and attacked him personally you still stick up for him. When Chris posted all of Bobs online stuff for people to see, out of shame Bob removed everything of himself before anyone could see. He never called his family anything. All that was ever said is what everyone has always said about Bob, we all feel sorry for his wife. I mean seriously, knowing what I know from having a man leave me almost 10 years ago because of MS, the same man who acts that way towards Chris I feel almost certain he acts that way to his wife. She doesn't need that kind in her life especially when she already has MS to deal with!! MS is an asshole and she already has two including MS, why does she need a third?
I was a college professor for years and I can assure you, I have told more than one student who has attacked me or didn't like what I told them about succeeding in my class, I was done helping them. It's amazing how many students go straight to the program directors to try to get me into trouble.
I think Chris has finally viewed this forum as such. I see he helped someone in the general forum about how to get disability, but as far as helping anyone related to CCSVI or Revimmune, unless they facebook him they will never get it.
He comes back to search the general forum because he can still help them. I see he told someone how to get disability. As he put it to me concerning these other forums, and I didn't say it but I sure understand it, "Let the dead bury the dead. There are too many people alive who want to fight this I can help."
Lyon was bad, but you may be worse Scorpion. But if you are the one person who wants to stick up for Bob, it's OK too. It is a free country.
Chris probably wants everyone to have the chance he has had, but he needs to realize, not everyone wants this out. It's like some of the other MS drugs that came before HiCy, like Tysabri. Many people choose not to do Tysabri because of the PML risk.
People that have MS may choose not to do HiCy because it does have risks and they may not want to take the chance of one of those risks happening.
I think he may have taken it personally because Lyon does not have MS. He is a care taker and bless him for that, but you have to live in the body before you can understand completely. Chris will hear these questions and negatives again from someone with MS and perhaps he'll reconcile.
We need to keep these discussions open and more past Immune Ablation patients need to come on board to help with answers.
Happy Valentines Day!
If you want to meet Alina or get a pic I can put you in contact with her through my face book page. She however does not use her real name because she doesn't want Bob to light her up like he does me. She lives in AZ I live in CO. I do know she is trying to get into Rush for HiCy and she may be there now I don't remember. It was Feb some time. I will let you contact every MS'er on my list if you want to Scorpio. She told me she tried to contact Bob to show him but he ignored her. She really doesn't like this forum, she likes the CCSVI page on face book more.
http://heartdiseasediabetes.suite101.co ... your_heart
http://www.webmd.com/heart-disease/news ... rt-disease
http://www.psychosomaticmedicine.org/cg ... t/66/5/640
http://www.charminghealth.com/applicabi ... titude.htm
http://www.salestrainingplus.com/salesm ... titude.htm
http://annonc.oxfordjournals.org/cgi/co ... ll/14/1/57
http://food-allergies.suite101.com/arti ... ac_disease
http://www.thehappyguy.com/disease-posi ... itude.html
http://www.usatoday.com/news/health/200 ... body_x.htm
http://serendip.brynmawr.edu/bb/neuro/n ... swell.html
http://www.lifepositive.com/Mind/psycho ... ealing.asp
http://www.helium.com/knowledge/110811- ... e-attitude
Every one of those articles explains why I refuse to listen to any negative questions or even entertain anyone who insists on being negative. There is no reason 1 person needs to have their positive attitude - the one thing that fights disease not big pharma related - destroyed because of one downer.
When I was first dx with MS I had a PT person tell me there was no use in working out because I was just going to get worse. 2 years later and being completely depressed I found out that in fact that was VERY WRONG. I can tell you PVNS and a couple of others quit coming to TIMS because they were sick and tired of people telling them they really didn't feel better and that it was fake. I mean almost all of us showed improvements on Revimmune and it still isn't good enough. All of us have went darn near two years, or more, without even a lesion or blip of MS. Who else has that after damn near being in a wheelchair. Hopefully the CCSVI people. Notice I didn't say there was no chance CCSVI was going to work. I provided a hope statement. Something some of you could learn.
I saw what Lyon said to Keri and it was the nicest thing I have ever heard him say. MS does not need negativity because it already is negative enough. He wrote the nice response to her after I blew up at him again. If it took that for him to be respectful I am willing to never post here again. However everything I post gets me compared to Bobcat Golthwait. I never took his picture on the internet and compared him to the guy in the American Gothic painting http://en.wikipedia.org/wiki/American_Gothic . I mean it was a TIMS person that showed me all this stuff and unlike him I didn't save anything. He saved my pic and Bobcats just so he could torture me. Notice - who cares right?? I can't let his ridicule and downer attitude effect me because I have a horrid disease. In all honesty the best thing that could happen to me related to this forum is he just doesn't respond to anything I write but I know it's impossible for him not to ALPHA male up. He can be the Alpha male, I don't care. I just hope others realize to be a duck and let his posts role off the back.
So read all those articles up there and maybe then you will understand my stance on negativity. People learn from mistakes on their own. Don't destroy the little bit of happiness they may have because it may not last. There is absolutely no reason someone needs to end it for them when the disease itself will do it for them.
BTW, I have started moving my foot for the first time in three years and all my spasticity has started to let up so I am still all gung ho for Revimmune because I have seen the good it does. But I also realize CCSVI is very important and those people don't need to be railed on either. I may have just fixed a symptom of MS, the immune side...the CCSVI could be the other piece. I don't know but I know what works for me. I have always taken the stance if you are doing what a doc says, you are not fighting this disease hard enough. There is more to do than the docs say anyhow.
Back into the woodwork I go unless asked a question again. Just because I don't post as much anymore doesn't mean I don't read stuff to see whats going on in the MS world. All my contacts are busy with CCSVI, Hicy, or Ty.
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