Had an MRI of full spine and head last week at neuros request following bladder problems. Came home today to neuros letter to GP which I have been CCd on. But which relates to previous appt two weeks ago before MRI. He says he believes this is most likely ‘early relapsing remitting Multiple Sclerosis’ and that he is sending me for MRI to ‘confirm the diagnosis’. He also says he will see me with the results to ‘talk about her future’. I’m not sure how I feel. I don’t feel ready to talk about the future. I’ve had all these appointments and scans and blood tests and throughout it all, I felt like it might still all turn out to be nothing. I don’t feel that this letter leaves me with the luxury of denial for much longer. Follow up is on 4th June. So I guess until then I just luxuriate in not being diagnosed and try to prepare myself mentally for what is likely to come. Any words of advice/wisdom from anyone?? I should imagine I will go kicking and screaming to neuro appt on 4th June… Feel like hibernating. PG xx
Hi PG, Aww that’s not very professional, especially if he has never voiced his differentials to you in person. What an absolute stinker. My advice to you would be to try and forget the letter, but I realise this will be extremely difficult. So maybe to just take it a day at a time and not think too far ahead (only thing keeping me sane!), there is still the possibility he could be wrong. I hope you manage to find some way of coping until June - talking to people on here? I have found wine helps! Take care, Lx
Hi Leora - thank you for your reply. The neurologist did infer as much at my appointment. I think I kind of hoped that in my head I had exaggerated what he had said. Apparently not. June feels a long time away! I would love to forget about it until then, but it’s quite consuming isn’t it? Especially being in limbo and now feeling that I know almost certainly that my next appointment holds a diagnosis. Of course, if there are no further lesions, then it will be more wait and see. I don’t know which idea I find most unbearable! I must try not to obsess. Although I know myself, and obsessing is rather in my nature! Xx
I’m sorry I can’t share any words of wisdom,
I can relate to it consuming your very being, I think its all part of the process, don’t beat yourself up about how you are handling it, do what you need to do to help your mind rest. This site is a great place to express yourself and relate to others.
Take Care & Share
I’m sad to read this. I know what you mean about holding into the glimmer of hope of it all being nothing, yet just wanting a diagnosis Good luck x
Hi PG, Sorry to hear about the letter. It must be really difficult to see it in black and white. I don’t have any major words of wisdom, except to say that whatever you have, ms or not, you already have it, if you know what I mean. If it is MS then knowing will in the long run be helpful, and will allow you to get treatments and if nothing else, begin to know your enemy. That said it doesn’t make this period of limbo any easier for you. Look after yourself and be kind to yourself, and focus on the lovely and good stuff in your life. Take care, Leah xxx
Thank you all for your replies. Regardless of how long the wait feels, the time will pass and the appointment will come around soon enough. Just so not looking forward to it.
Assuming he does make the diagnosis, is he likely to give me any information or anything to take away with me, or talk to me about DMDs? Or will he just tell me and send me on my way with a follow up in 6 months? Does anyone have any experience of the actual diagnosis?
I know I should just wait for the appointment, but the wait is killing me, and I hate not knowing what to expect.
PG xx
Hi again PG, I have been dx and to be honest it’s become a bit of a blur in my foggy brain. IF he does give you a dx at your appointment, he should refer you to an ms nurse. They will then see you to discuss things, like dmds etc. Might be worth asking the neuro if you do get a dx, if you are in fact eligible for dmds, as the McDonald criteria has to be met. Is he an ms specialist? If not you may be transferred to one as only certain neuros/ hospitals can prescribe dmds. That probably all sounds really confusing, but make sure he explains things and don’t be afraid to question anything you’re unsure of. No need to make any decision straight away and the nurses usually are a great sounding board and source of support. so chances are you will feel more empowered with them on your side. Hope that helps you a little, sorry if it’s a ramble! Lx
HI Leora,
That all makes perfect sense
He is an MS specialist, so that is a very good thing. Also, I have now had two separate relapses, plus lesions on my first MRI back in December. Presumably, if more lesions in a different area on this MRI are visible, that will fulfill the McD criteria - which presumably is why he sent me for the MRI I had last week.
That’s good to know about the MS nurse. I did notice on the reverse side of the neuro’s letter, he has CC’d it to me and to the local MS nurse, so that is good that the ball is already rolling.
It’s very strange, this limboland, I feel like I have been given 98% of a diagnosis, but I am frozen to the spot until things are confirmed 100% either way. I feel very frustrated that there is nothing I can do to proactively to improve the current situation.
Until he gives me a dx, I don’t feel as though I am allowed to panic or react. Because it could turn out that I am worrying about nothing, although it is distinctly unlikely.
Ho hum, 28 days to go… 
xx
It sounds like your neuro knows what he’s doing, which is half the battle! It is incredibly frustrating in limbo, but it won’t be forever, one way or another you will have answers in 28 days. Just remember to be kind to yourself, there is no normal way of dealing with this, So whatever you feel- just go with it. I sincerely hope that the time isn’t too torturous for you, do let us know how you get on, will be thinking of you. Lx
You could also look at it like this:
As soon as he gives you a formal Dx of MS, then you must contact the DVLA (and you are into the hassle of 3-year licences), and should also tell your insurance company. He is supposed to cc you on any letter to your GP, so you could say that you have been given a “heads up” on what to expect. That gives you time to start going through the Society’s publications and getting yourself prepared for the June appointment.
It sounds like you should be started on a DMD asap. Since you say that the MS Nurse has been copied in on this, you can ask him if it is the Nurse that you should be asking about DMDs. The reality is that while only some hospitals can prescribe a DMD, it will probably be the nurse who writes out the script. It can be worth deciding on which one you would prefer before you see the nurse (saves a lot of time).
Geoff
Hi Geoff,
Thank you for your reply. It’s good to think of practical things I can be doing. It’s good to know that there are things I can get the ball rolling now.
Thank you also for the advice re DMDs. I will ask the question at my appointment in June and also start doing some research on what might be right for me.
Your reply has given me more of a feeling of purpose - so thank you!
PG xx