Sorry got a bit carried away and posted twice!
Hi, where I live, you have to meet the criteria for DMD, 3 significant relapses in 2 years, I was diagnoseed last June and was offered DMD and to be honest, I had to take my time and weigh up the pros and cons, the pros outweighed the cons. I have been on Avonex for 5 months and I feel better now than I have over the past few years, so for me it has been worth it, so far so good.
As for the side effects, the first couple of months were hard the day after my injection, but it does get better through time.
X
I decided as soon as I was diagnosed that I wanted to take the most powerful non fatal medication possible. I think that even when you don’t have symptoms you are still accruing brain damage as most lesions are asymptomatic at the beginning of the disease. As you get more and more damage to your brain it recovers less and less well and you accrue disability I have been taking fingolimod for the past nearly three years now and haven’t had any relapses or changes in that time
I decided as soon as I was diagnosed that I wanted to take the most powerful non fatal medication possible. I think that even when you don’t have symptoms you are still accruing brain damage as most lesions are asymptomatic at the beginning of the disease. As you get more and more damage to your brain it recovers less and less well and you accrue disability I have been taking fingolimod for the past nearly three years now and haven’t had any relapses or changes in that time
Hi anne Marie. I had rrms for 17yrs and had no medication at all. I have had spms for 6yrs and am on various medications.
Mary
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If you have Primary or Secondary Progressive MS you ought to be free of medicine because the Doctors don’t give anything for these types of MS or am I wrong?
Cheers
Patrick
I’ve been diagnosed since early 1999 and have been considered as SPMS since 2009.
I don’t take any medication at all (…haven’t tried anything that’s worked as it’s meant to) but if someone told me of a drug to steady my right arm/hand - like it used to be before MS - I’d jump at it !!
Likewise, if something was recommended to restore my balance to how it once was …
…and voice, resolve muscle stiffness etc. etc.
Dom
i’m now secondary progressive i am still on rebif and ldn both prescribed by my neuro, on the same topic i was dx in 2000 and in 2010 i was finally allowed dmds after four major relapses within six months
i was barely walking by then plus all the other carp i’m now a full time wheelie and yes i do believe if i was given dmds when i was still walking and relatively healthy then it would be a different story today.I fully place the blame on my neuro, he did the same to my cousin ,shes completely dependant on others now
I had my first episode in August and was immediately put on gabapentin for the horrible nerve pain. I have tried to reduce it since thinking that as my pain has decreased by so much now I am in remission it would be ok, but I soon noticed the increased twitching and pain, so I upped it again. I am about to start Copaxone too. What symptoms do you have that you need help with, apart from the obvious preventing relapses?
Rizzo! Hi, lovel to see your name agian. You okay?
luv Polx
Hi
I was officially diagnosed in June 2013, but have had RRMS since 1995. I’ve had a total of four relapses to date, including the one that saw me diagnosed.
I underwent Alemtuzumab (aka. Campath) treatment in September 2013 and get my second round in September this year.
I still experience Secondary Dystonia when I’m really tired or fatigued, but have not needed to take Tizanidine since the end of August 2013.
I’m currently medication free- thank the Lord!
Best wishes
Tracyann
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Hi
I have been offered the drugs and have declined them for the moment.My last major relapse (i believe) was at least 2 years ago.I am sure i have had some sort of relapses in between this time but not on the scale of that one.My most irritating problem is fatigue.The neuro was not keen to start me on the drugs that can make depression worse due to my little accident with the Amitriptyline.
Hi
I have been offered the drugs and have declined them for the moment.My last major relapse (i believe) was at least 2 years ago.I am sure i have had some sort of relapses in between this time but not on the scale of that one.My most irritating problem is fatigue.The neuro was not keen to start me on the drugs that can make depression worse due to my little accident with the Amitriptyline.
Hi folks
I wrote a comment which was quite long and it dissapeared so I will paraphrase.
There is only one form of MS in my opinion.
NICE permit drugs which work on RRMS because it stops relapses.
I was diagnosed 28 years ago with SPMS and during that time I had 6 major downturns-RELAPSES- are you listening NICE
Primary Progressive MS will react the same way, relapses during progression.
If I had been permitted the so called RRMS treatment I would not now be in a wheelchair
This sounds quite bitter but look at it more like informed opinion. It all boils down to Cost of Treatment!!!
Patrick
Yes - I was diagnosed 3 years ago today and am completely medication free at the moment. (Touch wood).
I’ve had ms for 17 years not taken any DMD’s, taken LDN for 4 years, had ccsvi treatment 3 years ago, had steriods 3 times, in the process of trying to get fampyra as my walking started to deteriorate a few months back. Jue
I was diagnosed over a year ago. To start with I was on a course of IV/oral steroids. Then started on Betaferon, but had to stop after three months because of poor blood tests results. I’m not on any DMDs at the moment (not eligible), but I started fluoxetine six weeks ago as I couldn’t cope with anxiety anymore. Hopefully, soon I’ll get prescribed something for my tingling and buzzing, because often it prevents me from sleeping. And, for about a week I’ve been having another new symptom - spasms in legs and arms. Thankfully they don’t hurt, but just like tingling, don’t let me sleep properly.
Alex xx
Hey Alex why are you not eligable for a DMD.
hi Hobs,
I had only one relapse and the guidelines say ‘two clinically significant relapses in the last two years’
Good luck with your decision. I want to make the same but i need more help. Can you explain more or give me some advices?