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@TraceyR 

EditedLast reply

TraceyR

Need to show activity before offered meds for Primary Progressive MS

I have had my diagnosis changed from RRMS to PPMS but my latest scan in April shows it is currently not active, therefore, can not start medication yet. I have lesions showing on my brain, neck and chest but I was unaware I had MS until a year ago so I’m concerned that when the MS becomes active, I may be unaware this is the case and just get on with it as I previously have done and miss my chance for it to show as active to start the medication. I recently have an issue with not emptying my bladder fully which is probably causing the water infections which I have had a couple within the last month. I’m told this is why I am feeling the usual symptoms returning. How would I not know that this is a relapse in which I need to be scanned to see if this is active as the water infections are a recent issue? I don't want to waste the MS Teams time with small issues but I also don’t want to delay starting the meds by missing being scanned at the right time!! Also, any idea how often I will be offered MRI scans to check on the progression with PPMS?
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@watsoncraig
@watsoncraig
 

Hi, with PPMS there are no relapses. I get yearly MRIs, the only approved med is Ocrevus, which may slow the progression. Ocrevus is a 6 monthly infusion and the only way to know if it is working is by MRI. So to know and to get on it you have to have MRIs

@Catlady
@Catlady
 

Once you're told it's progressive. They say they do a yearly scan and appointment with doctor or MS nurse. They won't do a scan every time there's a symptom or worsening. If you have a problem, you're given a number to call the MS nurse. They decide on dmt if there are new lesions within that yearly timeframe. Even then they have a meeting to decide if you're allowed the infusion. If there isn't new activity, they do nothing, regardless of how you are feeling. I'm sorry, but the way you're 'treated' with progressive is different to relapsing remitting. I have trouble getting basic symptom control. There is a doctor on youtube that talks about smouldering MS. A name similar to Gavin Giovani? But there aren't many neurologists that chose to think outide the box unfortunately. This might be a good read /watch for you, gave me hope for future treatments. Regards the urinary problems. Ask your MS nurse for a referral to Urology or Incontinence nurse, whover there is available in your local hospital. If not emptying properly, you may benefit from intermittent catheterisation or another plan like keeping emergency antibiotocs or continuous low dose antibiotics. There's things they can do to help. Think about treating your symptoms one by one as treatment for the MS itself is non existent unless theres new activity on your yearly MRI's. Plus, be ready to do your own research regards symptom control etc look on Nice guidelines for treatment of whatever symptom you may have and ask gp for these things for example