ok for those that dont remember ill fill you in.
8 months ago I woke up and couldnt walk, cutting a very long story short, I have had 3 MRIs, 2 LPs and every blood test, an eeg ver and needles shuved in my legs and electricuted. 3 weks spent in hospital in 2months.
They found a lesion on my brain, told me they think its a one off isolated insedent and to see them in 3 months. My appointment was 9 months now i have changed it to the 14th luckily.
Anyway, I want to know the best way of dealing with this appointment and getting the most out of it, As my symptoms have not changed and i struggle to walk daily, I am always tied, I now get blurry vision and disorentation, cold limbs occationally and find it very hard to deal with this with no DX. I know it may still be something else but I am confused as i did have a lesion I also had increased lymphocytes and im scared as to what she will say because I dont want another LP i dont mind doing more scans but surely they have enough to act on, I really dont want to end up back in hospital. I know im just a number to them but to me im 27, married and trying to run our business its taking it toll. emotionally and physiclly.
Please help all advice welcome
I should add that after my first stint in hospital for 1 week, I left and was able to get about then it got worse so then 2 weeks i spent in hospital and then released, maybe 2 weeks of being relitively ok for walking and then since then it really is day by day, when I get up my legs feel like someonelses, I just dont want to be dismissed and want to know the fastest way to be diganosed with something.
Hi Tom - nice to hear from you 
If the appointment is with someone new, then it would probably be sensible to treat it as if it was the very first time you saw someone. So maybe prepare a history and list of main symptoms; add test results too? They’ll have your notes (hopefully!), but they’re often spread over lots of pages and are not always the easiest of things to take in quickly.
Actually, no matter who you’re seeing, it would probably be sensible to prepare the same sort of thing, if only so you can get everything straight in your own head and compare now with then easily because the neuro is bound to ask how you are doing now. So you don’t forget anything, it’s best to prepare a list of current symptoms and questions, including what they can do to help with your worse symptoms. Don’t hand it over for the neuro to just read - it’s for your benefit, and talking through it means that you control what the neuro actually takes in (handing it over can lead to a quick skim read and the note getting stuck into your file; not ideal!). If you want it “on the record”, take a copy with you and give it to the neuro at the end.
Do take someone with you too if you can - an extra pair of eyes and ears can be invaluable.
I can’t imagine that you will be dismissed. They took your symptoms very seriously last year and I can’t see why they won’t continue to. Unfortunately though, getting a diagnosis can take a long time, but it’s important to get the right one. No diagnosis shouldn’t mean that you go without help though so make the most of the opportunity to get meds, therapy, OT, etc.
Three things that I would ask if I were you: what diagnoses have they ruled out? what diagnoses are still in play, no matter how remote? what tests are necessary to rule these in or out?
I hope it goes well.
Karen x
Thanks Karen, Love the questions too, and if they have ruled them out should I ask why? or if it could change?
Thank you so much, Ive been keeping a diary of my symptoms, my activity and how ive been feeling so I will read them to her so that she knows, I may print a copy for her to hace to keep in my file.
I hope she doesnt rule it out, they did take it seriously before but when tested for everything they could was happy to see the back of me
Glad to see you again Tom. You’ve had great advice from Karen, so I just wanted to wish you luck with your appointment. I hope you get somewhere with it! Teresa xx
Hi Tom,
Sounds really rough. I have ten plus lesions and I am reasonable. I was just wondering if they had done an MRI on your spine? I have had two MRIs but they have never had a look at my spine. I was wondering if this might account for your additional symptoms?
Good luck with it all.
Adrian
Thanks Tree
Hi Adrian, yes, they did two the first one was blurry as I had involentry twitching so it was hard to stay still then they gave me some strong pills to basicly numb me up it was still blurry but not as bad well they said it wasnt great but nothing stood out so I dont know what thats suppose to mean, I had 2 of my head also.
for the whole spine i think they say it takes 45 mins and its a long time to stay perfectly still on what feels like a concrete slab! so its possible but they didnt feel nessosary to try again so I will ask them about that.