HI FROM THE UK READ AND SAY HELLOXX

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HI FROM THE UK READ AND SAY HELLOXX

Postby baffled » Sat Jan 14, 2012 12:27 pm

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:
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Re: HI FROM THE UK READ AND SAY HELLOXX

Postby euphoniaa » Sat Jan 14, 2012 1:08 pm

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: introductions-f20/topic18497.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.
*************************************************
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:

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

Tovaxin injection

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

*****************************************
Fingolimod orally

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.


Link to the Rituxan Forum: rituxan-rituximab-f39/
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: HI FROM THE UK READ AND SAY HELLOXX

Postby civickiller » Sun Jan 15, 2012 12:58 am

start with a healthy diet
search the ccsvi forum and Dr. Amir
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Re: HI FROM THE UK READ AND SAY HELLOXX

Postby LR1234 » Sun Jan 15, 2012 3:55 am

Hi Baffled, I am in the UK to so thought I would say Hi x
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Re: HI FROM THE UK READ AND SAY HELLOXX

Postby want2bike » Sun Jan 15, 2012 8:04 am

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.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://articles.mercola.com/sites/artic ... nking.aspx

http://www.facebook.com/notes/ccsvi-in- ... 1295097210
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