Hi all, I was DX 2012 and now have an edss of 6.5 so two sticks or a mobility scooter. Been on O since 2017 and treated every 6mths. Previously I was on Avonex and then Tecfedira.
In the last 6 months I’ve identified a number of minor medical issues - gallstone, kidney cysts, cysts on both testicle tubes and almost constant U.T.I.s.
These may have been partly contributed to the O suppressing my immune system. It certainly has slowed the deterioration of my mobility.
My MS nurse has indicated they may now extend my treatments beyond 6 monthly, has anyone experienced this yet? Also anyone else on O developed a raft of medical issues
TiA
Adam
Morning Adam,
Although our MS journeys have been a little different, i am now in the same position as you. EDSS is 6.5, I use two sticks and a mobility scooter.
Ive been on Ocrevus for 2 years (4th infusion) and ive not experienced any of the issues that you describe in your post. Appreciate this doesn’t help you much, but you definitely need to get it cheeked. If it is Ocrevus perhaps a new DMT could be considered? If its not that, im sure you would be keen to know whst it is.
Hope you can get to the bottom of it.
Tim
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Hi Tim thanks for your reply, sorry it’s taken so long to acknowledge it - Xmas.
I had two ultrasounds before in December which showed I’m unable to fully empty my bladder and some wall thickening.
I’ve now been urgently referred to Urology and seeing them early Feb.
Like all things there’s a massive variation in symptoms and disease progression
Good luck and thanks again for taking the time to reply
Best wishes
Adam