Last reply 1 week ago
Timescales at hospitals

Hi everyone,

Hope you all have had a good day. I have a question regarding timescales. My neuro rang me on the 16th Oct to say my lumbar puncture results came back positive so I have ms and that at the mdt I’ve been approved for lemtrada. Said ok great and was advised they’d send a letter.
That’s nearly a month ago now and I haven’t had a letter. Am I being impatient or should I chase this up? I’m at the QE hospital in Birmingham.
My ms nurse finally returned a call and said this
Is to be expected..
I’m getting tired of waiting 😊

Love to all xxx

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stumbler
1 month ago

@sensalize , a polite telephone call would seem to be in order.

If you get no joy, then contact the Patients Advice and Liaison Service (PALS) :-

https://www.uhb.nhs.uk/pals-contact.htm


vixen
1 month ago

Hello @sensalize. Diagnosis by phone call leaves a lot to be desired, that’s for sure. That said though, the process of DMT seems to be through OK though. So, while you are waiting, make sure you are right up to speed with preparations for, and expectation of Lemtrada so that you have no doubts and are absolutely ready to start. Once it gets going, they won’t afford to take the eye off the ball at all and you will be monitored. In the meantime, eat healthily and rest lots; all the best to you πŸ™‚


sensalize
1 month ago

@vixen she diagnosed me at a clinic a few weeks before and talked through treatment, she asked me to do lumbar puncture to confirm everything and rang when the results came in to say it was positive and they had discussed and Approved me for lemtrada. I want this treatment so I’m happy I have been. I’ve had problems with communication from their before. I originally got diagnosed with MS last December and then not a lot has really happened until recently.
I’m trying to be healthy now and drink lots of water. I’m no good at drinking now which has come in handy 😁


sensalize
1 month ago

@stumbler I’ll give them a call tomorrow 😁 I’ve not wanted to seem pushy but I’m also a bit anxious

Thanks


sensalize
1 week ago

Hi everyone

I have a consultation session at the hospital on Thursday to go through lemtrada and the treatment. I’m a 100% positive I want this treatment. It’s been a long wait since last year to get to this stage, I was diagnosed a year ago tomorrow only for them to drag their feet in doing something. Has anyone got any recommendations as to things I should ask?

Paul xxx

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