Waiting game

New diagnosis and before diagnosis
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Hi. I’m new here. After experiencing numbness down my left arm, hand, leg, foot, left side of head and neck, I was referred to a neurologist. The numbness wore off after a week, but I was still sent for an MRI. This showed 3 tiny areas of inflamation on the brain and I am being referred to an MS specialist. I’ve been told this referral can take 6 to 12 weeks. I guess I’m asking how people cope with the waiting and not knowing? Have others managed to get a diagnosis with only one episode or did you have to wait for it to be multiple episodes to qualify. In limbo. All advice gratefully received. Beth xx

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I’m just exploring the possibility that I might have MS so I can’t give you Ms specific advice. But I had testicular cancer and I had to play the waiting game for weeks at a time. I hated it. It was a time of uncertainty, helplessness, and fear. The best thing that you can do is arm yourself with information so that when you do have your appointment you can ask the right questions. Don’t speculate too much. Don’t get overly anxious about what you don’t know and can’t help… if you can manage to. Good luck I hope you get the good news that you’re hoping for.

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hi beth

i got my diagnosis after just one mri.

looking back i had random symptoms throughout my teens.

most people have to wait for evidence of multiple episodes.

worrying won’t fix anything.

if you are not constantly thinking about it the 6 to 12 weeks will pass faster.

if you have a partner or trusted friend who knows about your symptoms, take him/her with you.

he/she can prompt you if you dry up.

also can help remember what the neuro said.

good luck

carole x

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4

The advice you’ve been given so far is excellent.

The only thing I would add to that is to start keeping a diary or timeline of what has happened to you and when. Detail any symptoms that have come and then gone as well as anything that have just stayed with you. Take some brief notes with you to the appointment with the MS Specialist.

Try not to worry, nothing is likely to change the ultimate nature of the appointment. Unfortunately, we live in a world where waiting for appointments is constant. The time will pass.

Sue

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