@VanBax 

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VanBax

Site Newbie

Hi All, hope you’re all well. Thought I’d join this site to share experiences re living with MS, potential treatments, life/work balances and relationships. My name is Vanessa, Scottish, diagnosed with RRMS 12 years ago. MS Didn’t give me any significant problems (recovered well after initially treatment) at point of diagnosis, but over last few years chronic fatigue, pain and limb weakness and mobility seem to be hitting me hard. I have several autoimmune conditions which I am on “maintenance” type meds to keep disease under control. For MS, have been advised no DMDs available via NHS unless there is disease progression.
@ItsMewithMS

Welcome! I only found out about this site a couple of weeks ago and find it incredibly supportive and informative. Many of our stories are likely very similar to yours. I was diagnosed in 2004 and other than an occasional flare that was shut down quickly with Prednisone I have been basically symptom free. Initially I was on Copaxone but my neuro thought there were too many lesions piling up (even with no physical symptoms sometimes) so he moved me to Rebif a few years ago. I've had no new lesions once on that but I am also getting to the age where RRMS often transitions to SPMS. Knowing that is likely the slide I am on I will be starting with Ocrevus once the hurdles are passed like the blood work (submitted yesterday) and ordering the drug and scheduling the infusion. I think it is insane that you can't get a DMT without showing progression as the drugs are to prevent progression. I'm in the US and had no opposition from insurance companies back in 2005 of being put on Copaxone or any resistance since. I was at a top US facility last week (Mayo in Rochester US) and the neuro said that often he doesn't start someone on Ocrevus unless they have some active symptoms of SPMS...but from what I understand you don't "bounce back" from symptoms with that form like you do RRMS so why would you ever want to tempt fate and add more issues before trying to stop them? I will be asking why my Neuro isn't recommending Novantrone and when he would and does. Could just be the difference between our country's health care systems or maybe your neuro thinks you just had an isolated symptom.

@VanBax

@itsmewithms, thank you 😊 Yes our stories are very similar. After my initial visit to A&E with suspected TIA stroke or MS, I was diagnosed fairly quickly after all tests conducted confirmed RRMS. I received IV steroid treatment over three days hospital stay when I was diagnosed and was put on a variety of meds including Rebif too. Once I started to recover from the show stopping relapse, after a year I was slowly bouncing back to 100% and decided to slowly come off the cocktail of meds. That was ten years ago. Had the odd minor relapse that I managed to work through through the years until two years ago. I’ve had many MRIs last one very recently showed no active MS (despite a variety of new symptoms) although the MRI 18 months ago showed more lesions so I guess my neuro is trying to figure out if I’ve hit SPMS, or if meds I take to control another auto immune disease is having a positive effect on MS lesions. I also have ulcerative colitis, which is under control but I’m awaiting confirmation re the muscle and join pain and weakness is secondary to the UC or is caused my the MS or possibly both. I asked my neuro re when DMDs would be considered if he suspects SPMS. His answer was he wouldn’t as UC takes precedence disease wise and if I need a DMD for UC , I couldn’t also be on DMD for MS as being on a DMD for both would be too risky. So the jury is out on that one at the moment. Having said that my GI consultant is of the opinion that the UC triggers the MS and is aiming to keep the UC under control to help with the MS.