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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 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
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 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
Hi, baffled, and welcome. Again, I think. 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.
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.
************************************************* 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
******************************* Mbp8298 infusion
Here's another MSRC article about how it failed the trials:
Fingolimod is now brand-named Gilenya. Here's a link to the Gilenya Forum at TIMS:
gilenya-f43/
*****************************
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.
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.