Hello, Well today I got my diagnosis letter through the post, it was unexpected and a bit of a shock. Id started my MS journey 4 years ago with Optic Neuritis which cleared up in a couple of months. Had a lumbar puncture 2 years ago, several MRIs and was diagnosed with CIS with a 50% chance of being diagnosed within 5 years, that was 2 years ago. In August I had another MRI scan on my head but this time on my spine. The results came through today, 4 more lesions on my brain and one my spine. The letter asks me to ring the MS nurse to tell her which DMD I want to start on. Im in a bit of shock to be honest, I just thought I’d been forgotten about and I’ve been lucky, no noticeable symptoms although I get shattered by evening, bit of pins and needles every now and again but thats it. Oh and once tripped over a door step on holiday which led to my most recent scan. So I’ve decided to feel sorry for myself today and tmrw, I have a bottle of something nice left over from Christmas I might drown my sorrows in tonight, then Saturday think sod it and carry on best I can…what else can I do I suppose? Im married with a 13 year old daughter, work full time and going to make the most of feeling ok. I’m trying to push the negative scared thoughts out of my head, what good will they do? Anyways, any advice on a new honoury member of the club you don’t get a choice on joining or not. The drug choice i have is: Tecfidera Copaxone Mavenclad I haven’t a clue, suppose it depends on how fast my MS is progressing? I tried calling the MS nurse but it was a answer phone message saying leave a message and someone will call back as soon as they can but might be a wait due to covids, so I’ll wait, do a bit of research etc. Sorry for long waffle, any spelling grammatical errors which is all getting blamed on MS from now on!!! X
hi vincent
(apologies for the lack of punctuation. hitting the letter keys is an achievement)
I have way too many nice bottles from christmas, enough to get bladdered and remain so for a decade.
chuffing covid! it has really cocked up our appointments.
I have had copaxone and tecfidera.
Which medication will fit in best with your life?
I chose copaxone first because it didn’t appear to have nasty side effects.
Of course I managed to develop atrophy! (a missing chunk of tissue on my left bicep) caused by not rotating my injection sites properly so make sure you do it right!
This forum has been a godsend,
there is always someone listening/reading at all hours (haha! insomniacs R Us).
So in order of importance:
Choose your medication.
Drink your nice bottle (copaxone and tecfidera have no banning on alcohol! hurrah)
I have no idea about Mavenclad because it is a fairly new one and I’m old school!
Keep your smile!!!
Carole x
Thank you Carole, made a good effort in my bottle of something nice last night! X
Hi,
I’m newly diagnosed too, been through ALL the emotions too 
but I have reached acceptance and I’m pragmatic now, that’s not to say that I won’t slip back into sadness on occasion and there’s nothing wrong with that, but I’m trying not to!
Have you had your first meeting with your MS nurse yet? Because it I was at mine on Tuesday for the first time, they were so helpful and totally put my mind at ease. It was only there that I was given info on MS and DMDs, so as you already have your choice of drugs I wondered if you’ve already seen them? If not, I hope they’ve called you back to arrange an appointment for you, mine were pretty quick at replying to my answerphone message. My suggestion would be to ask to voice tape the meeting, as they go through A LOT of information, especially about the drugs, so it would be useful to refer to when you get home and have to make a decision (wish I’d thought of this for myself at the time - doh!)
I have to chose between Mavenclad and Tysabri, I’ve started a post to ask the experienced MS’ers for advice, but no answers yet. The drugs offered to us are dependent on how often you relapse and your symptoms, they all have different percentages of effectiveness which my nurse wrote down for me, for instance with yours, Tecfidera is 55% effective. Copaxone is 33%. Mavenclad is 75%. Of course, effectiveness shouldn’t be our only consideration as the side effects are too, as well as what fits best with our lifestyle.
I hope all goes well for you x
Hi Vincent. Welcome to the club. I take Tecfidera twice a day with food, breakfast and dinner. Easy tablet to take. I’ve personally had no side effects, those who do generally report hot flushes or an upset stomach. I’ve been taking it 2 years, pretty straightforward tbh. Blood tests every 3 or 6 months to check your lympho count. Your MS Nurse will answer your questions.
Hello, welcome aboard our merry ship!
Having DMDs will hopefully keep progression and attacks away.
I know having this diagnosis is scary, but in time youll find your way and theres nowt wrong with having a feel sorry for myself day.
Boudsx