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Recently diagnosed with MS

Hi everyone, hope your all well.

I have just left hospital on Saturday after being told I am suffering from MS which I would appreciate any advice you would be kind enough to provide me.

I’ve been advised it will be 4 weeks until I start treatment after leaving hospital,does this sound correct from your experiences?

Any other feedback on how you all have managed the condition with regards to deteriorating health, support networks and just general MS information would be welcomed.

Thank you for taking the time to read this and anything you post is very much appreciated.

Many Thanks

Jason

Hello Jason

Well, it’s a sod being diagnosed with MS. That’s the truth of it.

In terms of effects, the one thing you will soon learn is that no one is the same as anyone else. Someone on this forum describes it as a ‘snowflake’ diagnosis. And she’s right. It is. Because we are all very different.

Partly it will depend on what variety of MS you are diagnosed with. See https://www.mstrust.org.uk/about-ms/what-ms/types-ms

I would expect that you’ve been diagnosed with relapsing remitting MS as you’ve said you’ll start treatment soon. The treatment will be a disease modifying drug (DMD) and there are at present about 12 different drugs you could be offered. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You won’t have completely free choice of all the drugs, some of the decision will depend on how active your MS is, some on your prescribing centre, and some on your own choice.

The point of a DMD is that it reduces relapse and severity of relapses. But each drug has its benefits and potential side effects. In a way it’s a cost/benefit decision. Ie, what is the potential relapse reduction rate versus the possible side effects.

So big decisions ahead, but it’s worth talking to the people in your life about the options that are available to you as well as the possible negatives.

Keep talking to us, on the forum. We’ll help if possible.

Sue

hi jason

take heed of what ssue says as she is knowledgable about ms.

welcome to the club that nobody in their right mind would want to join.

your life will change but it will continue.

peace and love

carole x