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New too

Posted: Tue Jul 13, 2004 1:33 am
by JFH
Hi to all

I'm John and live in a rather pretty part of the UK near London. Stumbled across this site after a couple of weeks of intensive Googling - I'm new to MS too. Dx with RR (catching on to the jargon quick) last month - and to tell the truth dont feel ill nor am I disabled just a few "problems" to manage. (The upside is that I've had so many tubes inserted into most parts of me that I am reasonably sure that there is a lot of very nasty conditions I dont have!)

I'm 50 married two "girls" 19 23 both at University.

I'm at the beginning of this uncharted journey and so I am looking for honest (ok positive and honest) opinions TiMS looks promising. Look forward to sharing ups and downs with you.

Regards to anyone taking time to read this.
JFH

Posted: Tue Jul 13, 2004 1:22 pm
by adjanimals
Hi John and welcome,
I'm new also to this site, found it when doing a search on FRAMPRIDINE, a drug by ACORDA. I was dx in '93 at 30, not doing to good but don't get discouraged. My sister was dx a few years ago and is in her early 50's and doing good on COPAXONE. I saw an acticle in the archives here about GOAT SERUM from January. The London Times published it, maybe you can find out more about it since you live in the area.
Good Luck to you.
Al

Posted: Tue Jul 13, 2004 1:35 pm
by mscaregiver
Hi Al & JFH, Welcome to ThisIsMs, hope you enjoy the forum and post and meet all the great people here..

Philip

Posted: Tue Jul 13, 2004 1:57 pm
by Arron
Welcome to both of you! We look forward to your participation in the community.

Sorting the sheep from the goats

Posted: Wed Jul 14, 2004 6:44 am
by JFH
Al

I've posted a link to the goat serum (Aimspro) article in the Drugs Pipeline forum.

You may know that in the UK the B-interferons are prescribed free-of-charge to UK tax-payers with RRMS who in the neurologist opinion under national guidelines will cost-effectively benefit from the therapy, like me :} My dilemma is then which, if any, drug therapy I should embark upon, or should I try to get onto one of the research programmes (CAMPATH is another but I have ruled that out already - two deaths, although not of MSers but oncology patients, I believe associated with the drug.)

My symptoms are not yet very pronounced but treatment as early as possible seems to be the medics' current wisdom. So I'm leaning towards starting B-I treatment (which itself terrifies me) as the stake in the gamble that it will ease the problems I might get.

John

Posted: Wed Jul 14, 2004 3:43 pm
by adjanimals
thanks john,
try copaxone, i did a few years ago, some small side effects but going to go back on it.
Al

What I Take

Posted: Fri Jul 16, 2004 1:48 pm
by pathockett
Hi John

I have just started on Rebif as I chose it as it seems the easiest one to administer. I couldnt face the thought of the long needles so I use the autojet2 with a fine needle. It still hurts and I get a little swelling after and I was terrified at first. Now I have finished 1 month and although I still worry about injecting it is getting easier. I cant say if I am any better yet or worse but I havent had any side effects at all. The list of side effects sounded very bad but so far just the occasional headache about 30 minutes after injecting. My main problems are balance, tingling legs and arms, walking a long distance and feeling tired. They havent improved yet so I will just have to see what happens.

Kind regards
Patricia

Thankyou

Posted: Mon Jul 19, 2004 3:43 am
by JFH
Patricia

Thanks for that reply - I really mean that no irony. No medic yet has had the heart to tell me up front what I suspected - self-injection hurts!

Hope you get some real benefit for your courage soon.

Kind regards.
John

Posted: Mon Jul 19, 2004 4:47 am
by DawnsBrain
JFH
Welcome to the board! I am a Rebif injector myself as well. The injections do hurt. I have found them to be less bothersome as time has gone on and just a reg part of my routine in life now. It is a hard decision to make when it comes to making the choice of med but, just remember pick one that you "feel" will fit in better with your lifestyle b/c you are the one that will be having to have the injections.