Last reply 7 years ago
looking for friends with ms!

hi there, i havent used this site much since i joined ages ago, id love to make some friends around my age with ms as i havent spoken to anyone really since i was diagnosed.its always good to compare notes!

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femke
7 years ago

I am here we can talk whenever you want


pottypete
7 years ago

@marileic We’re all friends here, regardless of age. It seems we all have something in common.


stumbler
7 years ago

@marialeic, just join in or start a subject going, as you have done. There are a range of active members, from newly diagnosed youngsters (well, young adults!) to us older campaigners.
So, a wealth of experience. If you want to talk about it, we’ll discuss it.


femke
7 years ago

I’ve been diagnosed for four years now and progressed at a very fast rate . I was then sent to a professor in Toulouse hospital were I took part in a trial to try and find a stabilizer in my case it was chemotherapy . It was a trial for three years I’m afraid after two years of being sick and no hair and being bed bound because I was so ill I stopped but I am a year past that now and things have slowed down dramaticly ! Is this a treatment or trial in England yet ?


stumbler
7 years ago

Here’s a view on chemotherapy in the UK:-

http://www.mstrust.org.uk/atoz/chemotherapy.jsp


melissa-g
7 years ago

youve come to the right place! everyone here seems to be very understanding and helpful. Im newly diagnosed as well and if youd like to chat just shoot me a private message 🙂


gav
7 years ago

@marialeic pull up a chair, just get the first round in, alright? 😉


oskar
7 years ago

weird, i just wrote on another page, how solitary MS is, inasmuch i for one don’t know anybody with it – i have encountered 3 people with it previously, before i was diagnosed.


Anonymous
7 years ago

hi guys thanks all for the replies.what drugs r people on?i was on copaxone and it was blaitantly not working n ruinining my life.was diagnosed at 20. very ill til i started tysabri. im coming up to 2 years on it now and hope to god im not positive for the pml visus because i think itll b a really hard decision to make. il have just turned 24 and need to decide if i wanna continue on a drug that cud kill me or leave me severely disabled?sheesh. i was negative at my last blood test so im really hoping i still am.


beccygreeneyes
7 years ago

I am newly diagnosed too. Was diagnosed in may. Am now 27. My drug at the moment is LDN as I refuse to go on a DMD at the moment My neurologist wanted me on copaxone in may when i had optic neuritis but he said he has seen how my body has come out of this relapse and so now is ok with me being on LDN only. He said if i relapse again before next MAY then he thinks I should go on it so thats the deal we have come to. Am here if u want to talk!


markms
7 years ago

Hi we are all here if you need us and us old one”s lol


melissa-g
7 years ago

@marialeic ive just started copaxone a few weeks ago, though my skin is very sensitive to it so not sure how long i can put up with it… im also 24 by the way 🙂


gav
7 years ago

@marialeic I was 23 when I was diagnosed, I’m 28 now. I had two years on Copaxone but I started relapsing again so I’m now on Tysabri and its working a treats, 18 months without a relapse.

We’re in a better position now as patients, more choice of more effective treatments. A pill that you take daily has just been licesed and hopefully campath will be soon. Last time I checked I was also negative but if I did change to positive I think I’d stick. Your health team should be monitoring you for signs of PML, I’m not saying it will never happen, but there are steps to follow should it start happening.

Crossing the road could see you dead or severly disabled, but we still do it. We way up the risks and decide if its safe or not and that is life, just one big risk, so are you ready to play the game?


cedelle
7 years ago

hey! im 23, give me an add we can chat :)) xx


oskar
7 years ago

i’m not familiar with any of the drugs listed above. following diagnosis 3 years ago, neurologist went through some options but i refused them, saying i didn’t like the ‘exchange’ rate meaning feeling like i have ‘flu every other day to reduce relapse by 1/3.
he then asked if i wished to join his trial. i agreed and have been taking Dacluzimab subcutaneously monthly since, though maybe placebo for about one year at the start.
i have had only one relapse since and that was midway through the last 3 years. as side effects, it’s possible that i have developed a sort of seasonal eczema, though dermatologist said it’s not a drug reaction.
all in all, Dacluzimab appears to be fairly effective, but remains un-llicensed at this point. i believe there was a similar drug in the news recently, which i’m guessing is related as it ends ‘zimab’ i think.


kirstyscotland8
7 years ago

Hey. I am 21 and always up for chatting x


chrisgate
7 years ago

i am 26, i started experiencing symptoms over a year ago and have only recently been diagnosed. I dont know anyone in there 20’s with this disease never mind older. Its very good that these kind of site are here


beccygreeneyes
7 years ago

I am only just 27 and started gettin symptoms last year. I was diagnosed in May this year after having optic neuritis. Yep this is a great site!


lisa89
7 years ago

Hi Im 23 was diagnosed at 18 I dont know anyone with MS either so I know how u feel!! I started on copaxone it didnt work for me either then I was on Rebif that also didn’t work so now Im on tysabri for almost a year and havnt had a relapse thank god Im JC positive but I think I will definately be stayin on this drug regardless they keep a really close eye on you with scans and everythin to watch out for signs of PML its changed my life x


highheeledfagin
7 years ago

Hi, I’m 29 but was diagnosed at 19. I’ve only been on Avonex for the past three years and have only had one relapse in that time – it may have just been a good patch but and all a coincidence but I think the meds work for me, though how long before I develop a resistance is anybody’s guess.


forever-tired
7 years ago

Hey I’m 29 and have been diagnosed about two months now although I did have many different symptoms for the last year and then three relapses in six months. I’m planning on starting rebif in January, although I have heard mixed reviews. I don’t know anyone with ms although my bosses mum has it so I have had quite understanding support at work which has been good.


pepe
7 years ago

I have had symptoms since I was 12, but it only became serious two years ago. Now I am thirty six and about to change from Tysabri to Fingolimod.

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