I completely agree with you JanetV !! I also would like to try Lemtrada. I was diagnosed in July this year & have my first MS clinic appointment in November. If you or anyone on here knows will they still offer me DMD as I am sixty, as was told they won’t give them to people aged 60yrs & over? Someone on here wrote that but, I find it hard to believe surely it doesn’t matter what age you are. I’m on a mission too! Up the revolution!!! Helly.
I have also noticed my arms and legs tingle when im stressed, glad im not the only one 
Thank you for all your help, i will be researching this drug and most likely be asking my nurse about this.
I don’t suppose the gabapentin is a DMD?
Maybe they dont want to put me on it as iv not had many relapses? should i still request this or can they refuse to give it to me?
Alethia,
If you’ve been diagnosed with relapsing remitting MS, then you should be offered a disease modifying drug (or DMD).
I don’t have all the info about DMDs but here’s a brief list. I’m sure I’ve missed some off, but just to give you a rough idea. The old style injectables are beta-interferon (Avonex, Betaferon or Rebif) and glatiramer acetate (Copaxone). Nowadays there’s also Plegridy, which is a slightly longer lasting type of Avonex. They should all reduce relapses and severity of relapses by about 30-35%. They have been overtaken by the newer drugs, eg Tecfidera and Gilenya, both of which are daily pills and aim to reduce relapse rate by 50-60%. A second line drug (ie where you’ve been on one of the others and it’s not worked) is Tysabri, given by monthly infusion and with an expected reduction of relapses by about 65%. Lemtrada is a recently licensed drug that’s given for very highly active RRMS. You’d have to have very active MS to be given Lemtrada and be prepared for some nasty side effects but aims to reduce disability as well as relapses. It’s given once a year for 2 years.
If you don’t have a neurologist who is also an MS specialist, you can ask to be referred to a specialist. You don’t need to have had loads of relapses to get a DMD, many neurologists will give you Tecfidera if you’ve had one relapse in the past year plus activity on MRI.
I suggest you have another read through of Paulos postings (on this thread and others), he makes an excellent case for getting yourself 'freaking well on ‘Tec’ (if I have the right vernacular!) And if not Tecfidera, then another DMD. It does sound as though you probably are having some disease activity (maybe relapses?) and you should therefore give a DMD some serious consideration. Some people make the decision not to take DMDs. I recommend that you do, I had a very nasty relapse 3 years ago when I was not on a DMD for rather complicated reasons and haven’t been able to walk properly ever since.
Oh, and Gabapentin is not a DMD, it’s given usually for neuropathic pain.
It does sound like you need the help and advise of a good MS nurse to discuss all your treatment options. Do you have one? Is there one in your local area?
Sue
It is better to be proactive than reactive.
Considering MS cannot be diagnosed until the sufferer has had at least two distinct relapses, and also bearing in mind the conviction among neurologists that use of DMDs is deemed SOONER THE BETTER, if you are consulting someone who is not promoting your start on DMDs, then frankly you are wasting your time with an unqualified quack.
sorry about that.
good luck!
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Hi Sue,
I was given an ms nurse but he got me to see someone else instead of him and im not sure she knew what she was on about, they did introduce me to one of the other nurses who will deal with most of my calls if i do call in but im not sure of her name, they think they will be taking me in on Wednesday for one of their clinics so i will be requesting the dmd then
They are hoping the symptoms have gone before monday but im not so sure
I hope you are better by Monday, but whatever you do, discussing a DMD is pretty important.
Good luck
Sue