This Is MS Multiple Sclerosis Knowledge & Support Community

Cece,

The link doesn't seem to work. I am very interested in the docs in Tampa. Could you check the link, or PM me the list? Thanks!

Kathryn

Cure of Bust, may I ask? What dosage do you take? I just do 20mg for high cholesterol but have thought about trying a higher dose. My family doc is on board to try anything even LDN - she is cool!

Dont know how to delete this post!

Hey guys, thanks for your responses. I'm sorry it has happened to you too. I always want to research new drugs and treatments, and seriously consider any changes. He also said that I was "smart and educated and seemed to prefer seeing a specialist" (paraphrased) which I took to mean he was...

Well, after nearly 7 years with my local neurologist, he called this morning and told me he thought it would be best if I started seeing the MS specialist 3 hrs away as my regular neurologist. He says he feels bad that I didn't take his advice last year and start Tysabri, and that I haven't had a re...

Well, an update from me. I started IBT back after Thanksgiving, at the full 6". I have been nearly blind (about 90%) in my left eye after a bout with ON in August. Other than the last 2 nights (spent at a hotel) I have slept inclined every night. I have to say I am disappointed with the lack of...

Phil,

Please keep us up to date on anything happening in Bangkok. My brother lives there and he has been bugging me for years to come visit. CCSVI testing and surgery would be an excellent excuse for a trip, and I would have free lodging, help afterward, etc!

Thanks Andrew! Even though I hadn't read your response yet when I went to bed last night, I did try to stretch out more. I believe I eventually fell asleep on my back, with my legs straight, and I do feel better this morning than I have recently. I will keep trying to keep my legs straighter and rep...

Hey Andrew, I have been sleeping inclined for about 2.5 months now, and I really haven't really seen much difference. I have a bad case of optic neuritis right now, that started last August and is simply not getting any better. I am about 90% blind in my left eye. I keep thinking the bed will help b...

I don't know where in Canada they are meeting either. I must have Vancouver on my mind and that's why I put it down. Sorry!

Good news! I just got off the phone with Lisa Cafferty at USF and, because of all the interest, they have added an 8pm seminar! I left a message for them about 1 week ago and she just got back with me tonight. I know she is calling other people back, but you might still be able to get in if you call...

HighHopes - where are you getting your MRV and ultrasound done in Ohio? I haven't heard about anyone in Ohio doing CCSVI testing - I would love to be tested, no matter how far it is from home! Thanks.

Kathryn

Does anyone know what is involved with the study? The reason I ask is that I live in Alabama and would be happy to travel there at my own expense, but, of course, I can't stay indefinitely. I would really like to participate but I don't know if they would even consider someone so far away. Anyone el...

Hi, do you know if they are letting anyone come? Tampa is only about 5 hours from me and definitely the nearest place I have heard that there is an interest in CCSVI. It wouldn't be a problem for me to come for the seminar, or to participate in the study either! Thanks!

Hi all. I was sleeping a little late this morning but woke up abruptly at 8:15 when my bed started to slide! I had rigged it with wood and books a few weeks ago and it decided to collapse this morning! It was kind of funny, really. Anyway, I went to my regular flat bed to doze a little more and coul...