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neuro app tomorrow.....how should i prepare?

hi, i have a neuro app tomorrow and after shoving it to the back of my mind im now in a panic thinking ‘should i be taking notes?’ I a year ago had an attack that had alot of symptoms all come at once (tingly legs and arms, couldnt walk, hypersensitive to touch and sound, weird shaking fits) that all cleared up after a few months and i then went back to normal. i ws told it was an isolated event and had a scar caused by demylination. i forgot about it pretty much and was just happy got back to normal. then a year and a half (bout four months now) it happened again only worse and with extra symptoms. i’m walking again now after about a month but still have some symptoms (headaches, extreme stress, depression, fuzzy arm and leg, fatigue) the mri this time showed ‘high intensity’ on my brain. on my discharge letter it said MS? with the question mark. so i have waited a month or two for this neuro appointement for an explanation and now i dont know whether to take questions, notes of symptoms? also, after these two attacks, does it look likely ill be diagnosed? i sort of think i’d rather than then i can move on with this. any advice please??!! much love to you all x x x

Heya gosh you have had a rough time… I would definitely ask some questions…re what they think is wrong/ cause and the results of the recent MRI. and previous one… did they do an LP? it’s. not crucial but neuro may suggest it… Perhaps it is time to see what the neuro has to say and then you can put any relevant questions forward… the important aspect is you come away feeling informed and clear as to what has caused these episodes…and equally that any questions are answered and if not why… …? good luck and let us know how you get on :slight_smile:

i did have a lumber puncture the first time this happened a year and a half ago, but the results never came back to me or anywhere! i couldnt trace them. it’s one thing I will ask. Both attacks seemed pretty extreme to me, like so many symptoms all at once, but i managed a full recovery the first time, and this second time im alot better but still feeling unwell.

both discharged letters from hospital mention ms, nothing else has ever been mentioned and my doctor said ‘you just need to hear it from the horses mouth’ meaning the neuro. so i am expecting a diagnosis tomorrow.

but when i read other stories on here it has taken some people years to get a diagnosis so i am really confussed.

anyway, im mostly excited about tomorrow in a strange way, I want some idea of whats to come and maybe some help with my symptoms as the doctors wont go near me till i have a diagnosis.

thanks for your reply, i will post again tomorrow so others cn read my experience, because reading things on here helps me

amy -x-

i had a lumber puncture the first time i was in hospital, but the results never came bac to me! i tried search them down but never got an answer. thats first on my huge list of questions. im strangly excited about tomorrow and i hope i have time to ask questions and i strangly hope for a diagnosis so i know what im getting on with and hopefully ill have help with my current symptoms.

i will be back tomorrow to write about what happened at the app for others going through similar to read

thanks for replying

amy -x-

i had a lumber puncture the first time i was in hospital, but the results never came bac to me! i tried search them down but never got an answer. thats first on my huge list of questions. im strangly excited about tomorrow and i hope i have time to ask questions and i strangly hope for a diagnosis so i know what im getting on with and hopefully ill have help with my current symptoms.

i will be back tomorrow to write about what happened at the app for others going through similar to read

thanks for replying

amy -x-

Amy

Yes, do write some notes and make sure you tll them what symptoms were the same the 2nd time round and what were additional symptoms. I think the neuro would find it helpful from what I understand.

When I had my 1st neuro appt, I was still convinced it was a trapped nerve and I was confused having been to/fro the hospital with other issues that had really stressed me out, so I was all over the place and I could tell he was trying to not be impatient with me… the spinal unit had referred me, if I’d had the first clue what their suspicions were I might have been a bit more helpful oops They diagnosed me as likely MS then and there, I had no idea my spinal MRI was such a give-away til he blew it up on screen and showed me all those little white dashes!

I think as I was so stressed and the couple of weeks prior to the appointment were just horrible, I was still trying to join the dots and couldn’t. I knew so little about MS and I was so dismissive of additional things as I thought they were stress related.

At my 2nd appointment, I’d had my steroids and was a bit more clued up so had a list of what had improved and what hadn’t and he was really appreciative that I’d written it down along with my questions.

Good luck

Sonia x

Hi, I haven’t got any additional advice to offer but just wanted to wish you luck with the appointment. If you remember we were in hospital at the same time (I’m still off work sick unfortunately). I’m glad to hear you have improved somewhat. Let us know how you get on. By the way it seems to me that by being admitted to hospital and therefore having urgent tests with MRIs showing clear lesions we seem to have speeded up diagnosis somewhat.