Forum

Gognitive research...

I’ve been taking part in research into the the effect of MS on cognitive ability. There’s 3 parts to the tests and they are long and gruelling, the last part is an MRI scan that takes 72 mins, yes one hour 12 mins. My problem and I do want to help as much as I can, I have recently been diagnosed with a fracture at L4, (my lower back) Osteoporosis, and my back goes into v. painful spasm. Not to mention I’m claustrophic and had 2 MRI’s done in March this year. I would not like to fry the remaining grey matter! I usually pride myself on my small posts, so sorry for the size. Take care, M

I obviously meant Cognitive not Gognitive, or maybe that’s the problem? M

Oh hun you really seem to be going through it… although I did have a little giggle at ‘gognitive’… have to see the funny side. A woman with MS went to specialist as she had a bug she just couldn’t get rid of. She said “Doctor I know I’ve got an orgasm somewhere in my body!” :o Doctor could hardly keep a straight face… of course she meant organism… true story as I know the carer who was there… Anyway love, just want you to know I’m thinking of you. That is one hell of a long time to be in scanner. I’ve been in for about 45 mins (brain and spine) and was about to lose my mind by the time they got me out. I don’t consider myself claustrophobic but being shut in a scanner is challenge for anyone. I say times-tables to myself, try to remember poems I’ve learnt, count backwards… you name it… but great rushes of panic still come. Your posts are always short… you should try longer ones as always interesting and informative. We need more posts on PPMS! I think it’s great you’re taking part in research. Where are you doing it? How did you get involved? Hope you are doing ok today. Nice out here (London), sunny and breezy. Pat xx

Hi It was my MS nurse that put me forward for the research programme, every part of it has been gruelling with sections lasting 2 hours with no break OR even a cuppa at the end!! That time in the scanner scares me. The study is Phenotypic Characterisation of Cognition in Multiple Sclerosis its funded by the MS Society UK, I realise this sort of research is important BUT did I mention fear? 72mins is a hellish long time, I’ve got time to make up my mind. Take care, M

Hi M, have to say it sounds AWFUL and no cup of tea or anything…hmmmm… If I were you I would tell them you’re not doing it any more. Really hun, you have enough to deal with and it scares you and I really don’t think you should do it. If they want people to help with research they should offer something in return eh? Like weekend in posh hotel all expenses paid… HEY they might at least offer a cup of tea!!! :o Really darlin’, I think you should think about dropping out. Take care and hope you’re having good day, Pat x

I told the researcher yesterday that an MRI for that length of time would not be possible. I’d discussed it with my MS nurse who had put me forward for the study, she said that I’d also done more than enough! So there we go, thanks for your advice. Take care, M

Have had normal length MRI scans on a regular basis for around 3 yrs. As I am a larger size person and touch the sides of the tube,I have begun to suspect that they only ask me back when the inside of the scanner needs dusting!

Tony