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Recent PPMS diagnosis, help!

Hi, I am new to the forum and have just been recently diagnosed. I’m just coming to terms with it and starting to learn about the condition. Finding the forum helpful but any advice much appreciated. I’m starting to swim, finding reflexology helps and trying to decide if I should see a private dietitian. I see my consultant again in January. Thank you.

Hello and welcome. I’ve only been diagnosed for just over a year and I’m still learning… ask anything you want here and you will get some good answers. Ppms is a lot to get your head around and hopefully you have an ms nurse… they can be a really good source of information. Karen.

Thank you, Karen. I have seen my MS nurse once and she gave me a folder of information which I will look through. I believe I will see her again after my next consultant appointment and MRI scan. Having been well all my life it is scary to have had this diagnosis and worry about the future.

Hi and welcome to the Forum! Yep, I’m still learning too - I was diagnosed with PPMS at the end of June this year. There is only one drug at the moment for those of us with PPMS called Ocrevus - you may want to talk to your neuro about it in January as it’s not suitable for everyone and there are risks involved. Other than that, it’s good that you are still able to exercise, and a healthy well-balanced diet is always a good thing. MS seems to affect everyone differently and, as Karen has said, your MS Nurse (if you have one) should be of great help - mine’s brilliant. It can be one helluva shock when you first receive your diagnosis, so my advice would be to just take one day at a time and don’t try to forecast the future. The folks on this forum are very friendly and knowledgeable, so come on here and ask away at any time. We’re all here for each other. xx

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Thank you. I have seen that there is only one drug treatment currently available but not keen as you say it has risks and currently my symptoms are not bad and I believe manageable with alternative options like reflexology and swimming. I have met my nurse once and haven’t got another appointment with her yet. I have been advised to take a high dose of vitamin D and it is expensive, I did wonder if this could be done on a prescription and if so who would do that? Thank you. Happy Christmas

I get about a years supply of high dose Vit D online from bulkpowders it costs around £18.00.

Jan x

You can get vitamins online from many suppliers. Just be sure your vitamin D3 is of high quality and not bulked up.