@Joparrott1978 

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Joparrott1978

PPms

Hi all hope all well, I finally got my diagnosis yesterday after seeing my neurologist, I have ppms which I wasn’t expecting, but feeling ok about it , it is what it is, why is there no treatment for this ms, or is there I don’t understand really, will my ms nurse explain this to me, my neurologist went right back to my teenage years where I had glandular fever, so I have I had ms longer than what I think but didn’t realise? What helps with ppms I’m on gavapentin which she said I can up to 1200 mg a day, still getting used to all this & understanding it 🥰
@AndreaG

@Joparrott1978 The treatment options are changing. I would recommend you keep an eye on the MS charity websites. New treatments are coming up all the time and the medical profession are aware there is a gap in the market where PPMS is concerned. There are treatments available now, however your healthcare providers might not be aware of them. There are a couple of neurologists that you might want to look into. Dr Aaron Boster posts videos on YouTube and covers PPMS. Professor Gavin Giovannoni based in London, is also very well known in the MS arena. He has a blog called MS Selfie. You might also want to consider getting involved with a clinical trial. However, as all this is very new to you, may I suggest to take all this rather slowly whilst you absorb the information you have been given.

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@Mavrikis

Hi I also have PPMS and was diagnosed 2 years ago. A month ago I had my fourth dose of Ocrevus which is the only treatment for PPMS.

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