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itsmewithms
1 month ago

not sure what you are on now or if you have an active lesion. When I am having vision, gait or balance issues my neuro puts me on IV predisone to stop the impact. About 80% of the issue goes away within 2 days. From what I see in this group that isn’t always what everyone experiences. Most medications are given to reduce the chance of a future relapse but not impact an active one.

I’m heading down to the Neuro Dept at the Mayo in Rochester MN tomorrow and am hoping to learn much more about this disease that I was diagnosed with 17 years ago. Learning much on this group as well-


nobodyin
1 month ago

as I have PPMS this, Ocrevus, is the first drug of any sort I’ve been offered.


itsmewithms
1 month ago

Yes, finally there is something available for PPMS. This is very promising. I could be heading into SPMS so am also considering Ocrevus. I will learn more this week when I am at the Mayo in Rochester, Mn USA. I don’t know what else you can do medically but I am also trying to stretch and do exercises to challenge my strength daily like ride my stationary bike and squats, lunges, etc. Also hoping more exercises are suggested this week.

I don’t know if prednisone would help or gabapentin? I am taking Gabapentin and think it is helping me with balance and gait some. It may be helping with hip replacement issues not so much MS but some people posting say they have it for some of their MS issues and I know it is prescribed for spasms and spacisity.

This was an interesting podcast. Touches on the various forms of MS and research, medications, etc https://podcasts.google.com/?feed=aHR0cHM6Ly93d3cudGhlZ3VhcmRpYW4uY29tL3NjaWVuY2Uvc2VyaWVzL3NjaWVuY2UvcG9kY2FzdC54bWw&episode=NWQ3MTExNzM4ZjA4MjUxNDg3OWVlNmRl


nobodyin
1 month ago

Maybe I just have to exercise and keep infection free for the next 13 days. I take pregabalin for neuropathic pain, tried gabapentin but, it made my leg rigid. Am now wondering if I should have gambled all (my house) on seeking private treatment earlier.


Anonymous
1 month ago

@nobodyin Hey, during my Ocrevus infusion I was with another man who had mobility problems, he was using crutches and was very wobbly on his feet. 2 weeks later at the second half infusion, he was walking much better, without crutches and was a lot more stable on his feet. I thought the improvements were unbelievable in such a short amount of time.


nobodyin
1 month ago

Lukezni, I could kiss you. I should live in hope of such an outcome, but, my Specialist told me not to hope for too much , here’s hoping I prove her wrong.


nobodyin
1 month ago

I think I am going to be possibly the 1st person in Leeds to get Ocrevus for PPMS on the NHS, so my decline to date may unfortunately be much more permanent but, now I can only wait and see.


Anonymous
1 month ago

I’m sure that was hard to hear coming from your specialist. Hoping Ocrevus does great things for you and that you prove your negative specialist wrong 🤞🤞🤞


watsoncraig
1 month ago

@nobodyin up here in Jockland Ocrevus is NOT YET AVAILABLE for PPMS on the NHS so I have to fill in a personal statement on a personal plan to get on it as my neurologist thinks it would be a good idea. Will be filling it in shortly as don’t want to start if offered before I go on holiday (insurance reasons)


nobodyin
1 month ago

I must be grateful I suppose but, think my constant badgering has pushed me up the list. Have a complaint in against the NHS to boot over the length of time it took to get a diagnosis.

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