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Newly Diagnosed and Hello!

A couple of years ago I’d noticed I was regularly getting ‘pins and needles’ in my hands and feet, but thought it was a circulation problem so I started going to a gym. I’m something of a recluse who leads a pretty sedentary lifestyle, and hoped that regular exercise might solve it. I’m the kind of person who only ever goes to the doctor if something dramatic occurs, and a bit of tingling did not constitute a decent enough reason to bother a GP in my book.

Around the end of May last year I woke up with the feeling that the skin down my right side had turned to rubber; it was a very disconcerting feeling, disconcerting enough to warrant a visit to the doctor. My GP suspected shingles and told me to come back when the rash had appeared. After several weeks there was still no sign of the rash, but the numbness had now spread down my right leg so I went back, and this time was referred to a neurologist.

In mid-October I had my first appointment with a neurologist - by which time the symptoms had disappeared - and, after a number of tests (reflexes, Romberg’s, pinprick, blood, etc) was appointed to have a MRI scan at the end of November.

A few days before Christmas I received a phone call from the neurologist asking me to come in for a lumbar puncture. The scan had shown signs of inflammation in my brain, probably indicating MS.

I had the LP in early February and somewhat nervously awaited the results. A new appointment was made with my neurologist, which I had last week, and it turns out that I have relapsing-remitting MS.

I’m due to begin DMT next month. The appointment is in a hospital ward so I am wondering what it will entail and how long I’ll be there…?

Hello Paganstone

Welcome to the forum. I know it’s a place you’d rather not qualify for, but you are welcome for all that.

When you say you’re due to start a DMT, have you already chosen which drug you’ll take? Or has the decision been made for you? Generally most newly diagnosed have a choice of at least 2 or 3. If you’ve not seen it before, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

Without knowing which drug you’ll be taking, no one will be able to say roughly how long it’ll take. Or maybe the appointment is to discuss options? Of course each Trust has different ways of working, so it’s very much a matter of finding out your local arrangements. Do you have an MS nurse yet? If so, perhaps s/he would be the best person to ask.

Best of luck.

Sue