got another neuro appointment monday and i am begining to worry. i will get the results of my latest mri and lp tests, as well as the jc virus test. the last time i saw him i had a tentative dx, and in the 4 months since i last had an appointment things have got worse.i feel its a lose lose situation. if i do have ms its bad news and if he says i dont have ms its what the hell is wrong with me!! i keep getting told that if it is ms at least i know whats wrong, but i dont know which is worse.
keeping positive is hard at the moment but i expect the worry is something we all go through, i just wish i could sleep till monday. how do you keep yourself busy when all you can think of is the outcome?
sorry about all the negativity any hugs will be most welcome and comforting.
Having been in limboland for a year and half I can understand how you feel. I was lucky in that I knew my MRI results showed non-specific lesions before my neuro review. Though I knew about MS I hadn’t given it any serious consideration at this point and was expecting the neuro to discharge me or tell me he didn’t know. I wasn’t on this forum at the time. My main concern was I had a lot of stiffness and pain and I was concerned about things getting worse and not being able to work.
Anyway the neuro said he couldn’t say it was MS but he couldn’t say it wasn’t and offered me an LP & EVP. It seemed to be put there more as a if a needed reassurance. I really wasn’t expecting this at the time and decided I wanted to go away and think- he booked for me to come back 3 months later and by this point I was really struggling with work because of all the issues I was trying to balance. The neuro was terrible and had terrible bedside manner and said he wasn’t going to do the other tests- which really put me off. Flash forward to May - by which point I’d had ?trigeminal neuralgia and the hug. I knew it wasn’t in my mind and it all certainly wasn’t just going to go away. The neuro again was pretty useless and I got no help.
At this point I decided I could sit and stress myself about what ifs and put up with a terrible neuro or do something. So I was doing yoga, got a referral to another neuro and tried to focus on what I could do rather than the things I might not eventually be able to do. There was no point worrying about what if -it might not ever happen. I learnt that by some of the amazing people on this very forum who have managed to carry on working or competing or having a social life inspite of their health. Of course there is some adjusting and there are some people that are owrse off than others but who knows whether I’ll be one of them or not.
I was seen by a general neuro who then referred me to an MS neuro who from all my info suspects MS and it’s a game of watch and wait now. Even though I have no answer I know I’m in the hands of a capable neuro, I can get help with my symptoms if need be and I’m fighting back for control by staying stress free, healthy and doing whatever fitness I can. I have a great man in my life who I’m going to marry and so much more to look forward to. Whether it is MS I end up having or not; I’ve learnt life is too short to be worrying. I’m enjoying the health I have now.
Don’t be worried about the negativity it is hard and a big shock if you’ve had good health uptil now. But you will get through this regardless of whether it’s MS or something else you have.
Let’s hope that you come out of your appointment with some answers, the belief that your neuro is reliable, trustworthy and supportive and the knowledge you will get the best treatment possible.
I know it sucks, but it does get easier with time and experience.
thanks for the lovely messages and support. getting more nervous as the day goes on and i am trying my hardest to think positive and keep myself from brooding. i will let you know how i get on tomorrow
well, what do i say. we had to wait two and a half hours after our app time before i was seen. by which time i had lost the will to live!! as my mri and lp had no change, i now have “medically unexplained symptoms”. i have the symptoms of ms eg balance fatigue brain fog etc but no “clinical evidence”. i dont know where to turn now or what to do. any thoughts would be most helpful before i go to my gp.
thanks for the kind messages and i will start a new thread to see if anyone else has any thoughts.
