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HI FROM THE UK READ AND SAY HELLOXX

Posted: Sat Jan 14, 2012 11:27 am
by baffled
Hi to all

Iam new to this site and looking forward to chatting, sharing my experiences with ms and a general laugh. I was a healthcare assitant till a retired senior policeman crashed into my car at speed 70mph. 11yrs on and i have relapse remiting ms with epilepsy and rauhynards combined :lol: OMG yes i was left a mess. I have two kiddies and married to a policeman funny i know. Until my last relapse i was coping ok but now i hate ms with passion i was pretty lucky apart from the usual ms problem's my speech and memory and walking was not to bad but since December 2010 i lost all ability to speak and my memory was dire i would forget anything. My right side is so weak and my balance is like im drunk. As a result my eldest now get's bullied at school as other parent's think im a drunk and a danger. Im looking forward to hearing how you cope and deal with ms and treatment. Unfortunate here in the uk my local nhs won't fund my treatment so i have appealed and they are asking for costing of my other disability's and the medicines i take. i am blessed i have the best uk epilepsy neurologist and they are not happy i want a ms consultant and treatment as i can't take intravenous medicine im allergic to the cannula so i need the new med's on trial that are tablet formed but seriously exspensive. Have any of you heard of

BG12, leustat, Fingolimod,Rituxan

Hazexxx :razz:

Re: HI FROM THE UK READ AND SAY HELLOXX

Posted: Sat Jan 14, 2012 12:08 pm
by euphoniaa
baffled wrote:Hi to all

Iam new to this site and looking forward to chatting, sharing my experiences with ms and a general laugh. I was a healthcare assitant till a retired senior policeman crashed into my car at speed 70mph. 11yrs on and i have relapse remiting ms with epilepsy and rauhynards combined :lol: OMG yes i was left a mess. I have two kiddies and married to a policeman funny i know. Until my last relapse i was coping ok but now i hate ms with passion i was pretty lucky apart from the usual ms problem's my speech and memory and walking was not to bad but since December 2010 i lost all ability to speak and my memory was dire i would forget anything. My right side is so weak and my balance is like im drunk. As a result my eldest now get's bullied at school as other parent's think im a drunk and a danger. Im looking forward to hearing how you cope and deal with ms and treatment. Unfortunate here in the uk my local nhs won't fund my treatment so i have appealed and they are asking for costing of my other disability's and the medicines i take. i am blessed i have the best uk epilepsy neurologist and they are not happy i want a ms consultant and treatment as i can't take intravenous medicine im allergic to the cannula so i need the new med's on trial that are tablet formed but seriously exspensive. Have any of you heard of

BG12, leustat, Fingolimod,Rituxan

Hazexxx :razz:
Hi, baffled, and welcome. Again, I think. :smile: I actually put together links to all those meds except Rituxan (plus a few others) for a poster named Haze on another thread here: http://www.thisisms.com/forum/introduct ... 18497.html

Since I did already look them up and post about them together, I'll just copy & paste the reply from the other thread. And I'll add a link to our Rituxan forum here. Good luck, and either welcome or welcome back! Make yourself at home and feel free to post any questions you want. :smile:

Here's my info from the other thread:
Anyway, since you're new here, you may not have found that there are subforums for many of the current meds and also one called the "Drug Pipeline" (see this link: drug-pipeline-f13/ ) that discusses new meds that are still in trials, etc. Most every MS drug/treatment has been discussed to death at TIMS, so I also suggest clicking on the "search" box to find more info about each one.

Here's your list of meds and a few quick links and comments about them:
BG12 orally

It appears to still be in trials. Here's a link to articles about it on the MSRC website and a quote.
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1679
Quote:
"BG-12 (BG00012, dimethyl fumarate) is an investigational oral therapy in Phase III clinical development as a monotherapy for the treatment of relapsing-remitting multiple sclerosis (RRMS), the most common form of MS, and in Phase II clinical development for rheumatoid arthritis (RA)."

It has been discussed here a lot.
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Leustat orally

That is probably Cladribine (Oral experimental MS med – Movectro)
(Injection version for leukemia - Brand Names - Leustatin® or Livak in Europe)

Here's an article about how Cladribine was taken off the market right after it was approved:
general-discussion-f1/topic16996.html

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Mbp8298 infusion

Here's another MSRC article about how it failed the trials:

http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1308
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Tovaxin injection

Here's a link to the Tovaxin Forum at TIMS:
tovaxin-f36/

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Fingolimod orally

Fingolimod is now brand-named Gilenya. Here's a link to the Gilenya Forum at TIMS:
gilenya-f43/
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I hope some of this helps. I will also suggest that if you have a very specific question, like about a specific med, be sure to put it in the subject heading and it may draw out those with the most experience.
Link to the Rituxan Forum: http://www.thisisms.com/forum/rituxan-rituximab-f39/

Re: HI FROM THE UK READ AND SAY HELLOXX

Posted: Sat Jan 14, 2012 11:58 pm
by civickiller
start with a healthy diet
search the ccsvi forum and Dr. Amir

Re: HI FROM THE UK READ AND SAY HELLOXX

Posted: Sun Jan 15, 2012 2:55 am
by LR1234
Hi Baffled, I am in the UK to so thought I would say Hi x

Re: HI FROM THE UK READ AND SAY HELLOXX

Posted: Sun Jan 15, 2012 7:04 am
by want2bike
THe NHS did a study showing people taking MS drugs did worse than people not taking the drugs so I am not surprise they will not pay for them. Doctor wahls did pretty good using diet.



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