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Newly diagnosed

Hi

I am v new to this, being diagnosed 3 weeks ago of the back of a ON relapse which I was given 5 days steroid treatment for, which we do not think has worked.

i am due to meet my MS nurse on Tuesday. I have been suffering for the last week with severe pins and needles in my left side head to toe which even affects me brushing my hair, my coordination is also terrible I walk as if I’m constantly drunk and have a habit of walking into walls

Is this at all normal? As I really cannot imagine a life like this

​Thank you

Hello Careylu

One thing you will find is that a relapse doesn’t get better overnight, regardless of the steroids. They can carry on helping the remission from the relapse weeks or even months later. And sometimes a relapse doesn’t entirely remit. What does also happen is that if your nerve that’s been affected doesn’t completely recover, your body will compensate for the deficit. Again, give it some time.

MS is of course a complete beast of a diagnosis. You have my sympathy. You now have a steep learning curve. There are so many different issues that will need thinking about. It’s like learning a new language. Your MS nurse should be really helpful with information about your symptoms, relapses and remission and the all important disease modifying drugs (DMDs) decision.

Here’s a web page full of information about MS that’s specially aimed at the newly diagnosed: https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis

And another one about making decisions related to DMDs: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

The aim of a DMD is not to cure your symptoms, it’s to prevent relapses. And to reduce the severity of relapses. Each DMD has an expected relapse reduction rate and a range of potential side effects. In general, the most effective the drug, the more side effects you can expect. Your MS nurse will run through what options you have (you’ll not have completely free choice, it will depend on your MS severity, as well as what prescribing centres have been set up in your area).

Hopefully the current relapse will be over soon. Best of luck for your appointment with your MS nurse. You can keep asking us here on the forum when you have questions, we’ll do our best to help.

Sue