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Hi again.

Hi.

I joined around a year ago with a few complaints regarding my health. It was a worrisome post and I believe I only ever posted that topic. Either way, I have MS (diagnosed December 7th 2018). I wanted to say thank you to all who posted to me.

My biggest issues at the moment are cog fog, kaleidoscope vision in my eyes, restless legs and constant crushing pains in my spine. Oh the joy!

I’ve been offered painkillers from my doctor but I’ve been reluctant to take a prescription because I’m very frightened of the side effects. That said, I may need to cave, as it’s getting worse with the months. Anything I can do about the leg stuff? They just feel restless and spasmy at night – both legs.

Also, I was diagnosed with Relapsing Remitting MS… but my neurologist now thinks it’s “a more progressive type” …? My MS nurse insists that it’s Relapsing Remitting, but I have a letter here from my neurologist which clearly states “it is highly likely that Daisy has a more progressive type of MS, for which Ocrelizumab is licensed and so we will book the infusions as discussed and monitor her condition.” Can anyone translate? Because it feels like my neurologist might be thinking PPMS.

Thank you all!

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Morning Daisy take the medication they will keep an eye on you. I am sorry you finally had this diagnosis. Restless legs, there are meds, but make sure you have magnesium you can add it to your diet it really helps there is a magnesium oil some of my friends use to help their legs.

Not sure what your neuro is thinking to be honest. I would ask him.

Ocrelizumab is new for PPMS so could be he is thinking that but i have no idea. x

Hello Daisy

If your symptoms have followed a pattern of hitting you then gradually getting partially or completely better, then your nurse may be right about the type of MS. But if you’ve never recovered from any symptoms, once they’ve begun, then it’s likely to be more progressive.

Unless, you are in fact relapsing progressive. Where you have relapses and get at least some remission from them, but are also gradually progressing. The various labels attached to MS are sometimes a bit too restrictive. They need to be when it comes to disease modifying drugs I suppose, but people are more than a label and our MS doesn’t always fit into a neat box.

Regardless, Ocrevus (Ocrelizumab) is licensed for both RR and PP types of MS. It’s quite a heavy hitting drug, but honestly, given that you are early in your disease, it’s probably worth the risks. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more information about disease modifying drugs in general and Ocrevus in particular.

Don’t forget that you have the right to say yes or no to any drug treatment. If your neurologist is just making a decision on your behalf without asking what you think, you’ll perhaps need to do some research of your own so you can make an ‘informed consent’ decision. As well as looking at the link I’ve given you, try using the search box on this forum for posts about Ocrevus. This might help you to understand other peoples experiences of the drug.

With regard to your day to day symptoms, you could perhaps try some medication to help. Some kind of neuropathic pain killer, or even just co-codamol might help with the back pain. You could try a low dose of Amitriptyline which helps with pain and is also helpful with sleep - just make sure you take it in the early evening, it can leave you feeling dopy the next day if taken too late. Baclofen would perhaps help with the spasms in your legs (they are horrible to live with). Baclofen can make your muscles weaker, but so long as you start on a very low dose (they come in 10mg tablets, so start with one - the maximum is 80mg per day) you will be able to see a) if the drug helps and b) if it suits you. Do talk to your MS nurse about drugs which you can get prescribed by your GP.

As Crazy Chick said, magnesium helps, either as a supplement (try magnesium glycinate rather than citrate as magnesium citrate can have a laxative effect), or as an oil to rub on your legs topically.

Best of luck. Maybe now you’ve returned to the forum you’ll be a more regular member?

Sue