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How much is too much when bugging your neurologist?

Hello there,

Ive had RRMS for a couple of years now and have been managing well – In the last couple of months I have had a relapse on Avonex, nothing disabling, just noticeable.

I was offered Tyabrai but as I was JC positive and managing well. I didn’t want to take the risk at this point in time. I was told I would be put on the waiting lists for Gilenya and Alemtuzumab. I understand there are logistics issues to getting these drugs, which I understand.

However I phoned this morning (politely) and I am not on the list for either drug so I have had to hassle them again to ensure I get onto the list. I find this frustrating but am acutely aware that I do not want to annoy them! As they hold the keys to the treatment locker!

Would you ring again? Or wait – knowing that you may relapse again?

I’d give them a few weeks (maybe two) and then ring again just to check you have got on the list. If you haven’t, ring again every two weeks until you have. Always be very polite and apologetic about bothering them, emphasise how worrying it is having MS and that you’re just trying to reassure yourself that you’re going to get the treatment you’ve been told you should have. Meanwhile, try not to worry about how long it’s taking - hopefully you’ll get something before you have another relapse. and at the very least, you’ll know you’re giving yourself the best chance of getting the treatment you want. In my experience, the super polite but persistant approach gets results - they get bored of hearing from you without getting annoyed.

Politely asking the neurologist whether he has done what he said he was going to do is not ‘bugging’. Stay calm, courteous and quietly assertive and don’t let yourself be intimidated.

Good luck.

Alison

Agree with Alison 100%

I’m struggling to see why an apologetic approach would be needed in this instance. Polite yes but no reason to apologise for being proactive in managing your own health and ensuring paid staff are fullfilling their duties and responsibilities towards you.

Great advice from Sewingchick and Alison. If it was me though, I would ring every week until I was on the list. Good luck :slight_smile:

My experience is you need to keep checking with them to check. I kept thinking I was hassling but realised I had to keep pushing ring MS nurses neuro secretaries otherwise I would have had to wait until oct to see neuro when I am at breaking point. I didn’t leave them alone and now got an appt in couple of weeks. I was always polite as I think that is essential but I did emphasise the importance of needing an appt. Unfortunately you have to take control of your treatment.