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What to expect?

Hello

I have had a referral to the MS clinic but really not sure what to expect, and what to ask or mention.

I will give all you lovely people a little history…

in 2011 whilst I was pregnant I went completely numb down my left side, I went to the dr who did some tests and sent me straight to the maternity department at the hospital. They did an MRI and kept me in for the rest of the day until they had the results.

I knew there was something not right when the consultant came in with a nurse carrying a box of tissues, they told me that the MRI showed unexpected results, as they were expecting to see signs of a stroke, however, it showed various areas of demylination and they suspected I had MS.

I was referred to a neurologist and had a multitude of blood tests (the bloods all came back clear) and the neurologist said he was 90% sure it was MS.

I had a repeat MRI in 2013 which showed 2 further areas and the Neurologist suggested lumbar puncture. The lumbar puncture came back clear, and as I had had no further issues since 2012 he discharged me, writing to my Dr to say the chances have decrease however, there is still a significant risk of clinically definite MS

About 6 months ago I started getting burning pain in my left leg, and pins and needles in my left foot and the need to move it or it would suddenly jerk out, I ignored it as I just thought it was down to tiredness.

Then 3 months ago I kept forgetting my words, and couldn’t concentrate on anything or make it past 2pm with feeling exhausted, again I ignored it until the left side of my face went numb, at that point I went to the dr to get it checked out.

Since visiting the doctors, my left leg gradually stopped jerking, but still hurt, and eventually returned to normal, however it now feels like i have pulled a muscle in the right leg and is really tight, its quite bizarre that the left stopped and the right started hurting instead.

There have been other episodes that haven’t stayed around long enough to concern me, but there are times I feel like I am going crazy, and wonder if its all in my mind.

I have a referral to the MS clinic next week, and have no idea what to expect, is it likely will I have to start over with all the blood tests again, I appreciate no one can give a definitive answer, but if anyone could give me an idea of what to expect or their experience it would be helpful.

Thanks

Hello,

It’s pretty obvious that something’s not right and your doctors are going to have to recheck all your tests. It’s a drawn out process needed to eliminate conditions other than MS.

MS is very hard to pin down and neurologists use something called the McDonald Criteria as a guide. Other methods include visual tests, lumbar puncture and even a psychiatric evaluation to rule out a “functional disease”.

Keep a diary and record your symptoms. This will be a help to your doctors.

Stay with the Forum, as there are a lot of people here only too willing to share their experience and help you with the process. We’ve all been through it and we all know what the waiting is like.

Best wishes,

John