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is waiting over a month for referal normal?

Hey everyone,

i was diagnosed over a month ago by my neurologist who said he would refer me to an MS nurse and another neurologist who deals with disease modifying drugs…i’m still waiting…is this normal?

thanks for any help,

Rosie

Hate to say it, but I waited about nine or ten months.

The original referral came through quite soon (I think it was for about a month or six week’ time, which is normal).

But on the morning I was meant to go, I was already in hat and coat when I got a call to cancel, as the neuro I was supposed to be seeing had been taken ill.

It must have been quite serious, as she was out for about six months, and seemingly nobody dealt with her list during that time. Of course, when she returned, she had a huge backlog too (though you’d have thought that if I was one of the patients just about to be seen when she went sick, I’d have been near the front).

But all told, I think it was about nine months. Luckily for me, I was not desperate to start DMDs, and with my neuro’s blessing, decided not to in the end. So for me personally, I don’t think anything was lost by the delay - except that I had the additional stress of the decision lying unresolved for months.

If I’d been having back-to-back relapses and was desperate to start something, I suppose things would have been different, and I’ve had had to be on the phone moaning about how anybody’s patients can just be left for nine months post diagnosis.

The thing you have to remember is that whilst serious, medically speaking, MS is not regarded as urgent. It’s a lifelong condition, not a life-threatening emergency, so it’s very unlikely anyone would die or suffer irreperable harm by not being seen for a few weeks.

Tina

Give the neurologist’s secretary a ring. It can’t hurt, and, at the very least, will reassure you that the wheels are turning, if rather slowly. But things do get lost in the system sometimes, so it is always best to check in good time.

Alison

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hi alison

yes very normal i am afraid. not at all acceptable but thats the way it is.

alisons suggestion is good to put ur mind at rest meantime.

ellie

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Thanks for all your help. I have got an appointment with the MS nurse in a couple of weeks. I also have had a letter to see the neuro…and its in July this year. I was shocked about how far away it is but am grateful for an appointment. Thanks anyway for everyones help.

Rosiexx :slight_smile:

I had to pester my neurologists assistant to get an appointment with my ms nurse. I finally got in touch with her and she got me in straight away and was so so lovely. I had to wait 3 months to see my ms specialist neuro so ye its totally normal x