I had previously replied to the first message but did it by replying to your email message which didn’t work.
Hi Jean
Thank you for your email which clearly gives further evidence showing how much ageism is unfairly at play and how PPMS is overlooked. I’m 65 and my Ocrevus DMT continues. Why shouldn’t you also get it? Makes me sad and angry.
You may probably already have done so but what about complaining to your Neuro and or authorities? Maybe also seeking a second opinion and changing Neuro?
Sorry to hear about your situation. This shows what I’ve been saying that MS is overlooked and disregarded. Knowing that you should have been on a DMT all along must be so demoralising. Why isn’t there a system in place to make sure this happens. The variability of treatment depending on postcode continues to shock me. Have you spoken to PALS?
Hi @Giova No I haven’t spoken with PALS, because apparently that was how things were done 20yrs ago, it’s just that things have changed So I wouldn’t have a leg to stand on…if I could.
Jean
Hi @Giova well I’m going for an MRI on brain and spine in the near future, haven’t had one for about 6yrs, I’ve been told that even if there are new lesions, but they don’t show inflammation I won’t get them, but if they do there’s a good chance I will, so I’ll see.
Jean
Hi Jean That’s good news about the MRI. It’s long overdue and as usual we, patients with MS, have to pursue it. Good to hear you are getting scam of brain and spine. I’ve had to fight for scan of both despite having multiple lesions in both.
Hi @Giova So since my last message I’ve had a telephone call from my MS nurse, who had a meeting with the neuro this last Thursday, now because in the last 2yrs I’ve had 2 MRI’s, which by the way weren’t anything to do with the MS, anyway he’s going to write to the radiologist and ask to see the results, if he can get enough info form them he won’t order a scan, if not he will, so we’ll see, either way he will write to me.
Now I’m going to wait and see what comes from that, but if it’s nothing I’m going to request one on my spine.
It’s such a shame that some of us have to fight so hard for treatment, when I was talking to my nurse she told me something that made my blood boil, she told me that now the criteria when a person is diagnosed with MS regardless of the stage get but on DMT’s to try and slow it down, straight away, I and a lot like me where too late
Take care of yourself,
Jean
Well that’s good to hear and not before time. It does anger me that when we are at our weakest we are forced to work our hardest. Not just for scans but also to keep track of what we should be getting. They surely have to put you on a DMT irrespective of age. Ageism is not acceptable irrespective of what narrow minded medics may claim. I have a battle soon as I’m sure that I’m due for my next MRI
Well @Giova I totally agree with everything you say, I’ll keep you posted if anything comes from this and I really hope you get somewhere with what you’re having to fight for, I get sick of bloody fighting, but fight I will.
Jean
The same symptoms can come from very different places, and the bloods and the imaging do not always agree with each other. Did you get a clear answer early, or did it take a few attempts?
So I wouldn’t have a leg to stand on…if I could.