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Last year I was diagnosed with progressive ms after 20 years R/R. In the last year I have gone from walking with a bit of a limp to a power wheelchair. Are there meds to slow progression. My so called specialist said there were no meds when he changed my diagnosis last year. Now he will not return my calls, even a phone call. I am dying the slowest tortured death that I can think of slowly every day a little less able everyday. Needless to say at this point I’m panicking!
I was diagnosed with RRMS in 2003 although I I know I had MS for at least 5 years before my final diagnosis. About a year ago, my neuro changed my diagnosis from stable RRMS to PPMS based on the length of time I’ve been stable, 17 years.
When he changed my diagnosis it wasn’t clear to me why. The reason he gave was that there were new diagnostic parameters (from where?) and that, because MS is a progressive disease, he had to update my diagnosis. This didn’t make any sense to me then and it doesn’t make any sense to me now.
I have a new neurologist and the first thing he did was change my diagnosis back to RRMS and put me on Tecfidera. I know several people who take Ocrevus and are tolerating it well.
The longer I have MS the more I think diagnoses and meds are a throw of the dice and so are the neurologists who throw them. Win some, lose some.
When I went to my Neuro for the first time I interviewed him and I asked him questions so that I had the information I needed. I got answers I probably wouldn’t have gotten if I hadn’t asked questions and pushed for answers. Thankfully he didn’t hedge and was very frank and truthful with me. All I want is the unvarnished truth and I’ll deal with it.
Find a new neurologist with significant MS experience. What could possibly be more important? Best of luck...and keep us posted!
You definitely need a new Dr. I'm in CA and go to Stanford to see my MS Nuro. I've never left his office frustrated at him for not addressing everything I mentioned. Im on Ocrevus every 6mths. Like I've said I mentioned stopping them to doc, he had a point when he said won't get better but for no no MRI change. I went straight to PPMS, I also use my pwc when we need to cover distance, shopping my grandkids like to ride on the back of the zoomer at Costco, most days of day to day life I keep my can handy. Most days are okay, but I would never admit outloud I just want to give up.
So no matter how much pain, or frustrating moving around is.,,, refuse to give in to it.
Remember strong will can move mountains.
@A MyMSTeam Member....
Here's another group to check out....
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