I have ventured onto the new diagnosis bit of the forum (although I was diagnosed 15 years ago) because I wanted to post a quote from Gavin Giovannoni, who is a professor of neurology at Barts.
“If we take the approach of rheumatologists who treat aggressively and early, then in 15 years we could see wheelchairs as very rare,” he says. “But we have to act now.”
This is from the Times supplement on MS on Monday. Sorry that I’m posting too late for you to buy it (a friend gave it to me yesterday) but it’s really worth reading if you know anyone who gets the Times, or you may me able to get it on the Times website. It was full of stuff in it about the newest treatments and the postcode lottery for getting treatment at all. It said stuff that I really believe about getting the best drugs as early as possible. I’m going to post the list of top neurologists who are quoted in the supplement so people will know who they should be getting their GP to refer them to (I’ll be posting this on the Everday Living section shortly).
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Hello,
I was diagnosed a couple of weeks ago with relapse remitting MS after a really serious relapse and my consultant has said the exact same thing as this and wants to treat me with Lemtrada…
The only problem is I’m absolutely terrified. Being newly diagnosed and a) not expecting that diagnosis at all and b) completely new to what MS is I really have no idea what I want to do. lemtrada sounds like such an invasive and aggressive treatment and the risks involved with it are scaring the hell out of me (plus a phobia of needles really doesn’t help although I’m sure I’ll need to get over this!!).
I was was wondering if anyone has any recommendations for me or if they have been on lemtrada before.
Any information would be a really huge help.
Thanks,
Rach
The only thing I would have done differently if I had my MS time again would be to get on stronger drugs sooner. I have been on DMDs since 2000, and thank heavens for them. But for a couple of years my MS got a load more aggressive than my first-line treatment at the time, and the damage that did is permanent and every day is a reminder of it. I wish I had changed on to Tysabri a bit sooner.
Tysabri and Lemtrada are the most effective drugs going, no question. My advice to anyone whose MS is aggressive enough to warrant those strong drugs is to go for it - and the sooner the better. Aggressive MS is a very dangerous opponent.
Good luck.
Alison
I definitely agree, the sooner the better.
My MS started in my late 20’s but wasn’t diagnosed with RRMS until I was 45’ish…I’m now 63yrs. & really wish I had started DMD’s much earlier. As it was I only used DMD’s for 10/12yrs until my condition worsened & I’m now SPMS. Maybe if I’d had DMD’s earlier, I wouldn’t be at the stage I am now…who knows?
Good luck in making your decision
Rosina x
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Thanks Alison, I really appreciate your feedback. I’m Seeing the consultant on Wednesday so will hopefully get some more information from him.
I’m really glad to hear you’re doing so well on Tysabri. May I ask (briefly) what your experiences have been with it? As it looks as though my options are between the two.
Again thank you for taking the time to reply.
Rach
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Thanks Rosina. Again, I really appreciate any feedback.
After doing some research and listening to people’s opinions, I am swaying towards agreeing with my consultant and the Lemtrada treatment, I’m just so utterly terrified of having to undergo everything that comes with it. The same goes for Tysabri. But I understand that I will just have to bite the bullet if I don’t want things to get any worse. I’m Just trying to get my head around the diagnosis although I’m aware that time is not on my side.
Again thank you for replying.
You are welcome, Rachael. I had about 8 good years on Avonex, then two/three very bad ones with bad relapses and permanent damage. Not good. Then Tysabri for the past three blissfully quiet years. No relapses. No miracles either, but miracles are thin on the ground, alas. Lemtrada was not available to me as a choice, so I cannot say which one I would have gone for if I had had the option. Personally, I have always tended to ask the neurologist what he thinks I need, and go for that one.
Good luck.
Alison
Hi I am Peter and was diagnosed in December 2014 with relapsing remitting MS. I have also been diagnosed with osteoporosis after I had broken my knee 10 days following my diagnosis. This event coupled with pressures on the service here in Tayside resulted in me just starting medication. I am on Tecfidera and I am trying to contact members already on this treatment to find out how they have found it. I understand it has only started to be used since October last year. Any contact would be welcome as the diagnosis itself has been hard for me and a lifetime on medication is something I never thought I would experience.
Thanks
Hi Petee,
i too am on tec- about 4 months. Initial problems with nausea resolved. Occasional flushing which doesn’t bother me.
if you look on the everyday living section there are lots of threads re tec which will give you more info about people’s experiences with it.
good luck
Min x
Thank you for telling us x
hi peter
i’ve been on tec for 3 months or so.
rough with nausea and being sick when i first went onto the higher dose.
resolved it by changing the food i was eating.
take your tec midway through a meal.
i’m steady now and don’t even get the flushes.
persevere and if it gets too bad, contact your ms nurse and ask if you can have extra low dose,
paulo smythe is our resident expert so watch out for his posts
good luck
carole x
forgot to add that paulo smythe is on everyday living
I’ve had my first visit with the neurologist on the 18th of April. My initial referral was due to back pain and a right foot drop after walking a few miles. The orthopaedic consultant had sent me for a full spinal MRI. The results were available at the time of my neurology appointment. I thought I was going to be told I had a disc problem at L5 but was knocked sideways with a diagnosis of ppms. I was too shocked to ask any questions but my second appointment isn’t unit the 23 rd may. I feel like I am coping with a bereavement and struggling to see a future. I would be very great flu for any advice. I am new to using social media in this way so apologies if this is not the right place for this post…
Hi Again Dewdrop,
Phone the Consultant secretary and ask to be put in contact with the MS Nurse as they will be able to support you and answer questions. Otherwise there is a lot of good information here and on the MS trust websites. I was diagnosed in March and have been struggling too it is a massive life changing news so give yourself some time and post here as much as you need.
Snowqueen x
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Totally confused, I have just been diagnosed with MS by my neurologist, awaiting an appointment with the MS team.
I don’t have a clue what will happen next any help/advise will be great.
Any typing this has just made it all very real.
Jo
Hi Jo. You have added your post to an unconnected and old thread so a lot of people here might not see it. You would be better starting a new thread - the people on here are brilliant and you will get lots of really useful advice. Good luck - it’s all very new and scary now but, I think, all of us old-hands would agree that it can and will get more manageable.