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Has anyone on this list ever thought that they had progressed to spms from rrms. It feels like over the last year I have not truly experienced a relapse. Or I am not sure what a relapse would've been like, because it does not feel as if I have had a rest in my ms. When I was diagnosed the Dr. stumbled over my diagnosis almost as if she had to decide.between the two.... Any thoughts?
I was finally diagnosed RRMS in 2014 aged 40. I never thought it fit my journey. No obvious relapses but definite decline. I asked my neurologist about PPMS and he said it was years down the line and wouldn't discuss it further. I don't care about labels but what if I'm on the wrong medication just because one so called expert said I was RR and won't listen to my questions? How are you getting on?
I think neurologists are leary to diagnose as progressive because then sometimes insurance does not cover disease modifying medications.
@A MyMSTeam Member My first neuro diagnosed me with RRMS (MRI & Lumbar Puncture), said, pick a treatment, he liked betaseron because it had been around longest and felt it to be safe. Second opinion, betaseron was crap, made me feel like crap, went to MS neuro, he said why waste time on drugs with a low margin, tysabri has the best percentage of slowing down progression (remember - we want to stay RRMS so we can get treatment, because there really is nothing once you go SPMS etc..., so I waiting for three months, and said okay. that was four years ago. i had a trial on tecfidera which was total suicide and got back on tysabri. however, i also saw a MS specialist at Wake Forest as a third opinion, and a MS specialist from Mayo for a fourth opinion before I got back on tecfidera. They all agreed with diagnosis and treatment plan. My point, your comment "just because one so called expert", so get a second opinion. Your insurance will pay for a second opinion. Then, you may feel more comfortable. But, please make that second opinion count and go to a neuro that specializes in MS.
Yes...but my doc will not come out and tell me...I've asked and the question continues to be deferred...
@A MyMSTeam Member Thankyou for your reply.
I've been on tecfidera for 2 years now, not a massive fan though, side effects have calmed down compared to the first 2 months on it. The plan was to look at my meds after a recent MRI which showed no active relapses albeit a noticeable decline this year. So PPMS?!
Health care is a little different in the UK to the states I think, but my doctor has referred me, on my request, to change my MS care to a place in Liverpool called the Walton Centre who specialise in neuro conditions and damage so I'm hoping the care and information will be more forthcoming. West wishes to you
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