Have been diagnosed with RRMS about six months back. Am not currently on any DMDs as my MS specialist has commented will not be proscribed any until I have another relapse.
Am suffering from significnt lower (left) back pain and intermitteant pins and needles down both legs and take Gabapentin which provides limited relief. When I walk, I noticeably trail my left foot which was the primary reason why my GP pursued a MS diagnosis which was confirmed by MRIs.
More recently I have developed a dull pain in my right shoulder and pins and needles that radiate down my arm; is this a MS RELAPSE?? Advice would be appreciated as my MS specialist promised they would see me urgently to consider a DMD to slow down progression of such relapses.
Also folks, wonder if anyone with MS is taking Arcoxia which I know is primarily used in the treatment of arthritis. A user of this drug has told me it has been a revelation for him for his nerve pain and joint stiffness. ANY ADVICE APPRECIATED.
PS. Next week am going for an appointment with an Arthritis consultant as my GP thinks I may have it as well as MS; what double-trouble.
I’m relatively newly diagnosed but my understanding is:
(i) if you are diagnosed RRMS (or even CIS) you are eligible for many of the “moderately effective”/Class 1 DMDs (e.g. rebif / copaxone etc)
(ii) if you want some of the “more effective” Class 2.1 or “highly effective” Class 2.2 DMDs (e.g. techfidera or lemtrada) you need a diagnosis of “active” RRMS. This means you need to have had two relapses in two years.
(iii) other drugs (e.g. tysabri) require a diagnosis of “highly active” RRMS - meaning you need to have had two relapses in one year (or whilst on another drug possibly?)
If you are experiencing new symptoms (which it sounds like) I would def. push to see your neuro and push to have these new symptoms treated as clinical evidence of a second relapse so you can have your pick of the drugs.
For what it is worth, I suffered pins and needles in my feet in Feb/March 2016. Not painful and I could still go on long distance hikes/run - but enough to make me get them checked out. My MRI (March 2016) showed lots of lesions in lots of places, some enhanced and active and others old and dull. I was told I met the MS diagnostic criteria, probably had MS and was given steroids (which quickly cleared up my symptoms). I was being treated privately and had a 3 month wait to be referred back to my neuro (same one!) on his NHS books. During that time I had a second scan (June 2016) to see how my disease was behaving. I had one new lesion (no new symptoms) and my neuro used this as evidence of “active” RRMS (notwithstanding I hadn’t had a further clinical relapse). In signing me off for Lemtrada (which I received in August) my neuro also noted that an episode of vertigo I had in July 2015 (diagnosed at the time as an inner ear issue) may have been an initial relapse caused by a lesion on my brain stem (as further supporting evidence of my disease being active).
I hated the idea of having to wait for a further relapse to be eligible for treatment - and was very keen to start on lemtrada as my first line DMD so I was very grateful for neuro was prepared to use MRI evidence to support a diagnose of active RRMS (supported, if needed, by clinical history). Shows it can be done - so push for a second MRI - especially if you are having further clinical symptoms!!
To reiterate but hopefully enhance what has already been given as replies…
For you to have been diagnosed conclusively with RRMS, but not provided with DMDs is pure bollocks. Absolutely 5hite.
A RRMS diagnosis and a provision of DMDs go hand in hand.
It would be negligent for anyone to confirm this diagnosis and then to tell you to go home and wait for things to get worse. If the diagnosis is indeed correct, then it will not get better on its own and you are entitled to fight the disease.
The single best drug currently available for this fight is Tecfidera. No needles, few, mild side effects, massive efficacy in relapse reduction and disability progression. And no need for you to sit and wait for things to deteriorate further before you can get started.