I have been anxious all day … Tomorrow is my first neuro ap and I’m terrified ! I have taken advise and wrote a list but if I’m honest I just wish I could sleep everything away so I will paint on my 'I’m strong , ok and brave ( nothing wrong with me ) face on in the morning and be mostly holding my breath until 2.10 … What should I expect ?? An I going to be stuck at a family history question ??? ( have no idea , child of the care system ) wishing I could run away but at the same time just want a dx of some kind to get treatment . P.s so loving auto correct … I have more red words then correct spelling on here … Feeling more stupid everyday
Hi Ginger, will be thinking of you tomorrow I am going Friday morning for a follow up appointment with new neuro to find out IF they want to start treatment with me or not. My neuro at my hospital said he is “pretty sure” I have MS and have prob had for 10years or so and it as he put it’s “mild” but going to forward me onto Addenbrokes to see what they think. Hang in there, when I went for my first follow up after having I suppose my first “clinical episode” I was like you terrified, not sure what he was going to say, did not know what had been wrong with me (hospital could not be sure if I had had a really bad migrane or a stroke as have stroke history in my family striking memebers when they where young). He just went over my notes, did some reflex tests and talked to me about any symptoms I can remember having before having this weakness in the right hand side of my face but as it turned out he thinks it’s MS. I had some test done during my three day stay in hospital MRI, bloods, etc and my first thought was I’m 38, can’t take this in and the word “wheelchair” fell out of my mouth. I knew NOTHING of MS and I still don’t really and I’m not going to lie it’s been a funny old three months in limbo really but all I will say is I now feel after many tearful days and lots of happy ones that if it is then it is and I can get treatment so PLEASE try not to worry and I know that is NOT easy, I know that I will be worried like mad driving to Cambridge on Friday morning but everyone on this forum has been SO helpful and given me some great feedback and support. GOOD LUCK and PM if you like to let me know how you got on. All I will say is don’t be to hard on yourself, if you need to rest the do it REST , if you want to cry then have a good cry and if you feel angry it’s normal. It’s a new journey for me too, you are not alone and if nothing else I feel SO much better than I have felt in months and months just by listening to my body, making changes in my diet, work hours and trying to look at life now with a RIGHT I’M GOING TO GET OUT THERE AND GRAB IT attitude which I wish I had done a long time ago. BEST OF LUCK sure you will be fine and it’s won’t be that bad…hope I can remember my own advice Friday! LOL take care best wishes, Caroline x
Good luck, hope all goes really well. You’ll be fine. I’m counting down the days till mine, only 2 weeks to go!! xx
Good luck with appointment! Let us know how it goes…You are more prepared than I was, when my neuro asked me at my 1st app “so how are you?” my mind went blank and I answered “Oh I’m fine”!!
Get some rest and take care
P.S Just looked at your profile…I Iive in Grimsby we should be mortal enemies!!
Good Luck. I cant inmagine that too much will be said on first visit. They will want to do tests first I suppose.
Take care and let us know tomorrow how you get on.
Thank you all for yr kind words it’s my 1st after suspected ms but second time last time he said a had 2 ‘scars on my brain’ prob from eclampsia fit ?!?! After my 3rd and 4th child so I will let you know what he says tomorrow x x x
Little ginger 25 Jul 2013 at 4:20PM Top Add to favourites Like (0) Cancel email alertsQuotereply Just got back from neuro ap he has ordered MRI and lumber puncture and said I have BPPV ?? Is this normal for ms ? He also said to up my amytriptine 10mg every couple of weeks until is works ( currently taking 20mg) is this normal ???
Hi. The mri and lumbar puncture are the main tests they use to diagnose ms so hopefully you will get a diagnosis once they’ve been done. Neither test should worry you, don’t listen to any of the horror stories some tell you. Yes neither is totally comfortable but you shouldn’t worry about either. The scan is scary only if you suffer from claustrophobia, if you do then speak to your gp who can give you a sedative, the LP is a needle but the person doing it is experienced and the local anaesthetic stings but after that it’s fine. Just make sure you lie flat and drink loads of fluids afterwards. Please don’t worry, the worst part of all of it is the waiting.
Hi little Ginger, glad today went ok and you are getting the test you need I’m a real needle phobe and I had lumbar done in April during my spell in hospital it was fine did not feel a thing and during my MRI just closed my eyes and imagined I was on a lovely beach somewhere. My MRI was longer than normal as they did all of my blood vessels as they suspected mild stroke but it went quickly. I go to Addenbrokes tomorrow to see neuro to see if they 100% think MS so will keep forum updated. Best of luck with your journey Best wishes Caz x
Oh meant to say I was diagnosed in 2003 with BPV and my neuro at the hospital in Kings Lynn suspects that is when I have had MS since so maybe link? Will see what happens tomorrow and if I find out anything re BPV will post and let you know x
Hi again, Glad your app went well. As Min as already said the tests aren’t as bad as you think they might be, Its definately the waiting you have to go through thats the worst part of it all. Let us know how you get on. Take care BeckyX
Thank you all so much it means a lot to know I have people to talk to x x x and finger crossed for you all x x