13 November 2009

hey everyone

back again. the neck has eased thank goodness. now i just have the ache, which is preferable.

some good news, had an appointment at kings once again, with the eye doc, he flashed my results up on his computer screen from the electric eye tests i had. the p.o.t.s hadnt affected my vision, even though i have had the white flashing light in my left eye now for nearly two years. he doesnt think i have migraines. just one of those things, possibly bought on by a virus. my eyes arent damaged in anyway. yippee.

also he flashed up the mri results and said out loud they were ok too. so no ms. phew, i came out of the hospital a happy bunny, grinning. i had been dreading the results as the doc did some for ms, as some of my symptoms were similar.

so now they are working on the basis of hypermobility syndrome (being a bendy wendy) and p.o.t.s.

have to attend two more appointments before christmas and one in the new year, then some sort of conclusion will be drawn.

in the meantime i went to croydon yesterday, first time in months, since before the hospital admission. i was a bit tense getting out of the car sitting in the wheelie chair. yet i managed 1hr sitting up being pushed around looking for a winter coat, and a pair of jeans. went into monsoon, nothing, had a tea in costa coffee, then came home. today my neck aches, but it felt good being able to do normal things. also i know if i have to, i can do some christmas shopping, even if its time limited.

oh and i sent the lovely conker velvet coat back, the bugger was responsible for my wretched neck. ok i was i should of not put it on in the car.

hope everyones well. xxxx


Sarah♥ said...



Achelois said...

Brilliant news on the negative test results. I have ehlers danlos and also get the flashing lights! Except I call them dancing lights. I hope you have already been seen at the hypermobility clinic at UCHL and wonder if you could get a referral to the specialist hypermobility pain management course run there specifically for HMS/EDS patients. Because they understand about the need for specialist physiotherapy etc in the HMS patient. I know a lot of POTS sufferors see a Professor Matthias who specialises in this aspect of EDS. I just wish EDS had the same profile as MS sometimes as I am sure it would help if it wasn't such a little known and therfore misunderstood condition.

So pleased the mri etc came back with good news. Now all that needs doing is that the hypermobility needs some appropriate management so that you can be the best that you can be.

Take care Alice

Robert said...

Brilliant! You're feeling better & all the results were good. I'm really pleased for you!

diver said...

Hi Alice, that's great news about the MRI results. No structural problems with the 'ole brain means the bastids won't try and muck around with it! Yay!

Anonymous said...

Hi Alice,

That is great news. The results must have been a real worry hanging over you so now that they are clear I hope it brings you some relief.

Its good you got out yesterday. I hope more days like that come along for you.

All the best


alice said...

thanks sarah. im so pleased.xxx


hey achelois

at last some good news. you get the flashing lights too, wow. i havent been seen from eds, yet, i think after christmas when i see the consultant at kings maybe he will then refer me on. i know that he wanted to do this tests first to rule out other things. i will remember the uchl though, thanks for the tip. prof matthias keeps popping up on the net, at queens, something to keep in mind also, so that im armed with info when i see the doc at kings. im just starting on this path so im sure there is lots i have to learn. thanks again for the info. xxx. hope your feeling better.


thanks robert. im pleased, now i just have to pursue what is wrong with me!.xxx


thanks diver, glad the mri was over really. and knowing that ms isnt a cause was a big relief. xxx


hi nechtan

i hope that i will be able to buy my own christmas presents this year, i know i will have to rely on transport, but something like a simple task of chosing for someone, you dont realise what you miss until you cant do it no more. luckily i can endure the trips in the week, so avoiding the weekend crush. thank goodness.