@angieH 

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angieH

RRMS to SPMS?

I have read that rrms always eventually becomes spms. Is this so? I have a neuro who says that usually by my age (53 and diagnosed at 29), ms has established the pattern it is going to be. One sounds promising and one not so much. What would clue me in that it’s becoming spms? I have more difficulty with fatigue, balance, gait and musculoskeletal pain than ever. Last mri 18 months ago showed no Increase in lesions. I have another mri In August. I was put on copaxone not sure it’s helping. I just feel pretty bad most of the time not to mention I can’t remember things or organize my thoughts most times. That’s a lot but mainly wondering about the spms. Thanks for any info!
@ItsMewithMS

Hi- I was Dx with RRMS in 2005 when my foot was sticking out at an odd angle and I could not straighten it. Within a couple of weeks it was ok but I had an MRI regardless and they saw lesions, diagnosed me and I had to choose between the two approved DMTs for MS at the time. I was put on Copaxone. It is no longer seen as that effective given all the choice we now have. I was on it for 9 years and had a few attacks in that time affecting my gait and once my speech. They were resolved with IV steroids. I continued to have lesions so was moved to Rebif. I was on that for a couple of years with no breakthrough attacks but moved to Ocrevus once it had some time on the market and my neuro was comfortable with it. My MRIs are pretty stable yet I still have an overall decline. Due to this I have been reclassed to SPMS. This sounds pretty similar for you (except all the DMTs). While it sounds scary and "worse" I don't really think of it that way. When I had active RRMS I was still experiencing a slow decline underneath it all but every once in a while I had a major decline that I knew that I might or might not recover from. That uncertainty bothered me and stressed me out. Should I plan on a vacation, on a career change? What if I have a relapse, etc. How would I get Sol Medrol if I took a business assignment in Europe, for example. Having progressed into SPMS I feel more in control. I try to do all I can in a day and take care of myself. Get my sleep, avoid stress, take my D3, eat well, etc and am on Ocrevus. I feel stable and while I expect a slow decline I "rage, rage against the dying of the light" ;-) as expressed by Dylan Thomas. I will not go gently...I do better against constant pressure (SPMS) that the instability and unpredictability of RRMS...just trying to put a positive spin on it. https://www.youtube.com/watch?v=KcRWaOjOL2I&t=831s As far as Copaxone...I think I stayed on it too long, saw the price go from less than $1k/month to like 5x that much and had mounting lesions. I don't know that it is approved for SPMS? I didn't like the daily injections (finally changed to 3x/week) and it isn't viewed as that effective vs the other options out there. Over time my injection sites started to show the impact by dimpling and crepey skin. I also dreaded injection night over time. I would push back on that suggestion as to why they feel it is best for you. If you intend on becoming pregnant, yes, or have reactions to other treatments it may be a good option but otherwise? If you are really risk adverse it is also an option as it is seen as safe with few side effects. https://www.youtube.com/watch?v=Sd69KmEpsWM&t=14s Are you on the east coast? I'm in the midwest ;-) many of the members here are in the UK but I understand many new subscribers here are from the US. Good to see some posts- Good luck!

@angieH

Itsmewithms, Thank you so much for this thoughtful response. Yes I’m on the East coast, get my treatment with Johns Hopkins MS Clinic. I trust in my treatment. What I didn’t include was that I was diagnosed in 1997 when I experienced paralysis of one eye. Through LP and MRI, I was dx w MS. I chose to ignore it after sxs resolved and didn’t start any dmt until 2017. Little did I know the damage was continuing behind the scenes in the absence of symptoms. I’m sorry now. Guess I was in denial. I think I will talk to my Dr. about other treatments in November. I think the thought with Copaxone was that my ms was causing me so little issue at the time. (Until 2017) when I had a flare following extreme stress. I’ve never fully bounced back. Just always tired, dizzy, uncoordinated and in pain. Just not the me I used to know. Anyway, thanks so much for your insight! -angieh