Andrew 49

New diagnosis and before diagnosis
1

Hi there, im Andrew aged 49 and my story started with 2 seizures…complete black out for me but my wife saw me thrashing about like an epilectic fit.

I went to hospital and had 2 MRI, a lumbar puncture, a test with earphones and dots on a screen, lots of blood tests. They found 2 large lesions in my head - one in my brain and one cervical spine : i figure they caused the 2 seizures.

The result was a diagnosis of M.S - i was very sanguine in the room and the consultant was taken aback by my lack of reaction.

I then had appointment with M.S nurse team who advised chemotherapy - that word freaked me out. It sent me spiralling further into denial.

I did not attend the chemotherapy appointment. And now 6 months on ive decided to go ahead with it.

My symptoms are tingling in fingers and toes, i occasionally stumble over my words. I get tired very easily some days where i know i shouldnt be. I also get my right leg just jerk out by itself a lot.

So thats me and i know now i should have gone to that appointment initially. I was freaking out a lot and i think the whole diagnosis rocked me more than i let on.

Ive been prescribed vitamin b12, folic acid, and pregabalin.

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I don’t really understand the term ‘chemotherapy’ in the context of MS. It isn’t a term I have ever heard and I have had MS for 20+ years and am on one of the most effective drugs. I am sorry that if was used to you and that it spooked you - and how would it not? - and has therefore delayed your treatment. NOT the result they intended, I am sure. Ah well, better late than never.

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By the way the drug is Ocremizulab - ive butchered the spelling i expect.

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Its the same drug they give cancer patients, too. But it’s a much lower dose - like 2 per cent or something. But i ran for the hills for 6 month’s didnt want to know.
Yes they used that exact terminology which is not the best way id say.

1 Like
5

OK, thanks. I would probably have run for the hills too. Neurologists are not famed for their bedside manner and it’s sometimes not hard to see why!