This Is MS Multiple Sclerosis Knowledge & Support Community

I forgot to mention this... I sent a UK doctor the protocol that Dr Simka uses in Poland. This doctor responded and said that Dr Simka is focusing on the jugular veins, which makes sense at these are easier to treat. I see this as a possibility that Dr Simka's method could possibly be missing the az...

Thank you for this thread. My husband and I are off to Bulgaria in September for CCSVI testing and hopefully treatment. My husband has primary progressive ms and we are trying very hard to keep our feet on the ground and not expect miracles. This thread helps. It also helps to read that those who ha...

Thats it Badger, keep trying, a door will open somewhere. Colmmc - did you go to the GP? What happened? Having thought about it, I think the best way is to get a referal from your GP to a neurologist to discuss CCSVI, talk to them, take the information and ask for a referal for a scan to see if you ...

Hey hey, me again. Im still reading articles - soon I will know more than Dr Zamboni! MarkW thanks for the info. im sure that without intention you may have caused some offence - we all want this to be taken seriously that is why we are working so hard on it around everything else we do. Yes we are ...

Hi Michele, yes that is me - krystalla. Thank you hugely for helping me. I have started downloading the documents I think that are most relevant. Yesterday I hadn't finished going through the CCSVI facebook page, and there is still this forum to go through and the MSRC website. I agree, lets get the...

Morning all, Thanks for the feedback so far. BodeIT I think your right, I have got alittle confused with the target market! help. I will have a bit more of a think about it later. I am thinking we also need a section explaining why the UK are not taking the study seriously - yes the clinical trial w...

Me again. Im shattered, but I cant read anymore! I am not even close to where I wanted to be! Sorry. I will do some more tomorrow night. I have downloaded lots of documents to read and summarise. I thought it would be worth clarifying the structure. I am thinking we need a 2 pager putting forward a ...

Hi, just to let you know that the CCSVI facebook page is now asking people to provide information of regional groups, facebook pages, webpages etc. Gary, Michele, as you are pioneering the facebook page and website, would one of you like to add the details? Here is the link: http://www.facebook.com/...

OMG! Colmmc that is fantastic news. I agree with Dovechick, a personal story would be great - lots to choose from!

About the information pack. Im on it now, so I will post in a couple of hours what I manage to put together so far to get your comments.

blimey! there is alot of information - my problem will be working out how just a few documents could give a full and persuasive picture. I havent read nearly as many documents as i will need to, but I am thinking we will need to include: - One medical publication on Dr Zamboni's work - Details of th...

Morning All, My brother has managed to find out that in Birmingham there is the facility for transcranial dopplers - is this what we need? he got the following email from a contact of his... "There is a large experienced vascular unit in Sandwell and City Hospitals Birmingham (Mr. Silverman) an...

Hi Rose, Your story is very inspiring and hopeful. My husand has primary progressive ms and although hopeful we are nervous as firstly, does he have stenosis and secondly with the progressive forms I have heard that they dont have as great an impact on physical quality of life - although liberation ...

Hey hey, ok I will take on the information pack. I will build a list of document links. Michele/ Dovechick I may need you to review it, you seem to know alot about CCSVI. I'll get back to you in a couple of days. P.s. Nice to put faces to the names on the facebook page. P.p.s. BodgeIT you mentioned ...

Hi BodgeIT, So sorry your mum is having a bad time. Traveling is frustrating with limited mobility. It will be worth it though. Count me in. I agree with all your suggestions. I think it's important that we are all sending out a consistent message, so maybe we could build an information pack? I thin...

I know, I'm such a freak, I'm checking it 3 times a day! Anyone would think I submited the petition. Nice work Colm.