Forum

frustrated....

Hi one and all. I posted here a while ago as the neuro suggested that I may have had something called ADEM if not ms. Since then I have been prescribed amatriptyline for pains in my back and also to try to stop burning sensations in my arms and legs. The neuro said I should have another mri in Jan and he’d see me in clinic in 6 months time. I haven’t had the mri appointment through yet but got a letter today giving me my next appointment date…October 2012!! Is this normal or should I contact his secretary about the mri he told me I was to have?

I hate feeling so needy, sorry if this post is coming across as a bit whiney.

Chis

Not whiney at all :slight_smile:

Unfortunately, what a neuro says about when he/she will next see you and what the appointment letter says rarely match! It’s important that you have that MRI on time though, so I think you probably should phone his secretary and check that it’s been requested. You could also try the MRI unit at the hospital and see if they’ve had the referral. While you’re on to the secretary, you could mention the appointment date too - seems crazy to be having an MRI in January and then not seeing the neuro till October. He’ll need to review the MRI and your symptoms & possible ADEM much earlier than that.

I hope the secretary can help :slight_smile:

Karen x

Hi Chris,

You’re certainly not coming across as whiney at all! You’re worried & frustrated and we all know what that’s like…

I would definitely contact your neuro’s secretary regarding the scan and sooner rather than later too. With Christmas coming up you don’t want to end up missing out. I would think that should anything show up on the scan that your neuro would contact you prior to your appt anyway but why not mention to his secretary that your appt seems an awfully long way off and can it not be brought forward - particularly if things are getting worse for you.

Good luck

Debbie xx

Thank you both, it helps to have a second opinion as I know everyone waiting to see a neuro is in the same boat and I don’t want to appear that I’m queue jumping as I do feel a lot better than I did but seem to be spending most of my time asleep!

Chis x

Hi, your post isnt at all whiney...youre just like the rest of us…trying to get some answers! So never feel your questions are unimportant.

I last saw a neuro in feb. he said he wanted to treat me as a new patient, as I have been round the houses for 14 yrs now and still no firm dx!

he ordered EMG tests and botox. The EMG came back normal (again!) and the botox didn`t help at all.

That neuro said he might want another MRI…I`ve had 5!

I`ve heard nothing since and am fed up of chasing him.

I reckon I defo have PPMS…so no-one can make me better, can they?

I am on all sorts of drugs for the symptoms. Some help , some don`t!

I hope you can get better treatment than i have.

Good luck.

luv Pollx

hi even if your appointment is months later you can still normally get your results from the mri within a month or so. you can request to get a copy of the letter the specialist is sending your GP. This means at least you can have your mind put at rest if it comes back clear, and im sure if you dont understand the contents you can have a chat with your GP, or even your neuro might be able to phone you. Hope it all goes well xx