Waiting

New diagnosis and before diagnosis
1

Hi

I have had an MRI and get the results on wednesday. I have waited for 8 weeks, and have tried not to think about it too much, but the last few days have felt like a life time and I cant get it out of my head.

I know its not the end of the world if I have ms, but fear it might feel like it for a bit whilst I get my head round it. I have tried to discuss how I feel but have gave up, I find I end up feeling worse and nobody understands how real my concerns are. I keep getting told not to worry about it.

I don’t want to be emotional at my appointment, so I can make sure I take in any information Im being told and ask any relevant questions but based on the way im feeling just now I don’t know how im going to be able to control it. Any advice would be appreciated. Thanks

2

I’m afraid that even when we expect it, being told we have MS is still a body blow. And, yes, it’s very hard in the beginning, but it does get better.

Don’t worry about being emotional at the appointment. I’m pretty sure neuros are used to it. I guess the main advice I could give you is to prepare thoroughly - for being told it’s MS and for being told it’s not. Write everything down that you want to ask, but tell the neuro that you have a feeling that you won’t take everything in, so would he/she please put the answers into the letter he/she sends your GP, so you can read the answers later, when you are more up to it. Also, take someone with you. An extra pair of eyes and ears can be very helpful. You could always prime the other person to ask the questions too, from the list that you prepare beforehand.

Remember that it doesn’t all have to be done in that one appointment. If it is MS, you will have an MS nurse who you can call any time and, of course, you have here. If it’s not MS, then there are probably equivalents for whatever it is. If the neuro still doesn’t know what it is, then there is still here. So whatever the outcome, you aren’t on your own.

Good luck.

Karen x

3

Thanks Karen.

I got a phone call today to say my appointment has been cancelled because the neuro isnt available so it has been moved to 21st. So more waiting! I think some where along the line I convinced myself I would be diagnosed with ms but need to be prepared for the possibility that the results will be inconclusive or its not ms - so thanks for reminding me of that! Will try to put it out of my mind for now. Thanks xx