seeing neurosurgeon tomoz.

im writing this to let people be aware and also know that i was diagnosed with my m.e from a neurosurgeon and had every test known to man kind to rule others out.

anyway i have lesions on one side of my brain and it was caused by some trauma years ago theres nothing they can do about it.weird i thought.

anyway my mom,sisters all have epilepsy and i have suffered with absent fits for many years been to doctors and been told yes you have it and then another no you dont.

i have been nearly hit by a car,walked into cars parked and non whilst having these bizarre episodes,been out to clubs and the strobe lighting has sent into one,

when back to doctors he said it was my m.e causing all these fits.but recently ive been having more and more and they scare me lots.

i cant look at bright lights,strobe lighting of any kind,loud music,or i have one of these nasty episodes.

ive been on waiting list for only a short period and have been offered a sunday appointment at the hospital tomoz afternoon.when i asked why weekends they tell me that they have such huge waiting lists that the neurosurgeons have to work weekend clinics now.

im worried that they are either gonna put these down to my m.e or my fybro but i want a explanation about my lesions ?and i want a def yes or no to epilepsy?i cant live like this .

i am a danger to myself and others sometimes.

a learner drive once hit me when i crossed the road and i was having one,the poor womans face good job she wasnt speeding..

so please wish me luck.

and this shows how stretched the n.h.s is at mo.

p.s ive emailed my local m.p about our upcoming appeal too and hes going to come round to our place and help us the best he can,with atos,the appeal and anything he can help with?

so heres hoping someone will listen?

have a good weekend..

[fairycazzie]

Hi

I hope things go in what ever way you wanting it to go tomoro,

You are going through quite a lot !I do not have any lesions on my brain and i do alsorts.and cannot cope with any clubs anymore or music in pubs or too many around me talking, hve to focus, so cannot imagine how much worse you are.

I take medication that is used for a variety including Epilepsy which brings me asking constant questions to the Dr's I seen a Neurologist but was down the cervical spinal cord and compression on my nerves which is i guess causing a number of issues combined with other things. I thought and believved i must have MS and i have ppl in the expert world who still agree and think i have but yet the professionals dont and they get a slot of half hour visit compared to the many many years of relationship you have with others close by who see you day in day out and see the changes.

So glad you not had anything worse happen to you on outside world and that you are here to tell us.

I had MRI but had no lesions but never answered my problems.

Let us know how things go and do not worry that it is a Sunday appt i have had wkend appointments before it is down to waiting lists

Take care and soft hugs..... xxxxxxxxxx

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God love you Sammy and good luck tomorrow, at least you are gettin more investigations too, I'm still waiting for more scans and I wish I was seeing a neurosurgeon, because i would love to know whats going on in my brain with my fibro fog, I dont have epilepsy though when I was working as a special needs assistant in a schoo I did see some students with epilepsy so know about the bright lights thing, but fluerescent lighting gives me a ferrosious (cant flipping spell anymore with this fibro fog, blast) headaches and sweats and I nearly pass out, one of my colleagues in school used to tell me to go to the doctor with it , because it used to happen to me every day at lunch in the staff room, if I did'nt sit in a certain place (that got the least lighting), maybe I will mention it to him again, anyway enough about me I hope you get a satisfactory outcome tomorrow, and take care and God Bless pet xxxxx

[julieevh]

Good luck Sammy.

Bad news that you have leisions - they might be causing the problems - hope you get a diagnosis that can lead to an effective treatment.

I've got CFS/ME but the strange episodes (diagnosed variously as a full stroke, ministrokes and "we havent got a clue") started happening a good 15 months before CFS was diagnosed - but I think I probably has been just out stubborning mild CFS for years, if not decades, before the stroke.

Julie xx

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Good luck for tomorrow Sammy. I will be thinking of you and hoping that you get the answers that you are looking for. Take care! Jane x

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Best of luck for tomorrow Sammy, please let us know how you get on. Take care. (((hug)))

[lynnh]

Hope it went well Sammy x