Thanks all of you! It's nice not to feel so alone with all of this.. it's been pretty isolating..

This is going to be a short generalised reply...

Firstly I went to see my GP about it (PCP) and he doesn't know what's happened or why. NHS won't do an MRI scan as an emergency (apparently). So have had some blood tests done (though amusingly I passed out 8 times on the way to the surgery (6 minute walk from my house) and it was him that (nearly) passed out when I had the blood taken!! Bizzarely had no neurology work up. I'm passing out slightly less - apparently about 40 times today including one where I fell from my wheelchair onto the floor! However I'm getting amnesia episodes where I can't remember what's happened or conversations I've had etc which is pretty scary!

Sandel - thanks so much babe... problem is in the UK you wait years for some appointments and there's very little you can do to hurry them up! So though the GP reckons some type of autonomic disorder and I'm positive on a tilt table test I haven't seen the consultant yet. Otherwise, much more emotional, low blood pressure, high pulse, low blood sugar levels, dizziness, loss of vision/ double vision, paralysis, extreme exhaustion, amnesia/ amnesiac episodes, frequent faints (40+ day) and fits (5+ a day). Increased pain... inability to go over any form of bump or movement of my back and neck so can't tolerate any form of step at all. I love vanilla - thanks babe!

Hey heather - I haven't got a PM from you??! how are you doing? I finish this semester in the Summer but have a couple of weeks off at Easter. I've just cancelled some of my work for now and will just try and take it slowly.
Much love and thankyou ... this thing is scaring me quite alot!!

Love ya

Frogga xxxxxxx

Frogga,

So sorry you have been going through all this. My deepest sympathy lies with you. I don't understand why you're passing out this often, I hope there is a reason and cure to stop this. It must be so difficult for you...yet you keep trying. What an inspiration you are...

And James, what a guy to have on your side, huh?

Hugs and well wishes for you both through this difficult time.

GHL

Hi Frogga,
I really hope that you start feeling better soon. Please let us know what the results of the blood test are.
Thinking about you

PS: Just heard from GOSH I am going on the 25th March 2008.

Hi Frogga,
I'm so sorry your going through such a diffcult time. It must be awful to be passing out so many times during the day. Hopefully the doctor will be able to help you soon so you can start to feel better. I will be praying for you that things improve for you. I will be thinking of you. Take Care

Laraine

Why are you passing out all the time? Is that the RSD? or meds?

I have you in my thoughts always...You are one tough chick...You make me look like a GIANT baby!

I too want to be updated onthose blood tests hun...Oh, and no sense in me resending the IM...I practically said it all in my last message. I was wondering why you never responded back...

I am so sorry that you are going through the pain and suffering that you are. That James is sure a tough, incredible, guy, Frogga! You hang on to that one!

Love always,
Heather

Hey Frogga,

What happens if you turned up at an Emergency room describing your symptoms? They should have a duty of care that does not enable them to deny you treatment. What the heck is going on there?
Here you would have been admitted and had EVERYTHING necessary. They are liable for you if they send you away unchecked and something goes wrong.
You need to be contacting your member of Parliament, you need someone to be your advocate.
The nurse in me says your symptoms are serious and NO doctor worth his salt can say otherwise and pretend it isn't happening

I can't believe that your health system can be so bad that they can turn you away, send you home without doing every test that is needed to find the cause
I am shocked that this occurs in a country which is not exactly third world.

Please , please go to an Emergency department and refuse to leave.
Love Tayla

Hi Tayla,
When we got to the Emergency Room in the UK (A&E), they look at you and your symptoms and then if they think that something is not right or you need an operation etc they will admit you and run all the tests you need.
Our GP (PCP) is just there for medications,diagnosis, help etc. Before I was diagnosed with RSD my GP looked at me and told me to go to the Emergency room asap. I think this is what they should be doing for Frogga
I think it is wrong that they wont do an MRI scan on you as an emergency Rosie. Something needs doing.
You are in my thoughts
Thanks

Rosie so sorry for you pain levels and complications. I can see how you would be scared to have all of that happening. I am in my Master's program and I know how much it means to do well and to get through school. I admire you for doing it. It is not easy. Your BF sounds so wonderful bless his heart for being there for you through all of it. I wish there was something that could be done so you would at least know what is up.

I will lift you up in prayers and hope that something breaks through with help for you and quick. I would love to see you stay in school and be able to complete your course study...

HUGS honey..

Thanks all of you! you really are the best!!!

I have an appointment with my neurologist in 2/ 3 weeks and he's like an uber Dystonia doctor and he actually LISTENS to me which is so awesome! so hopefully he can help me abit. Waiting for some test results to come back and will take it from there. I'm struggling abit at the moment because the pain is just awful - we are getting snow and rubbish like that and am so exhausted. I keep fitting alot and it's just so annoying! Also getting amnesia from the passing out/ fits. But oh well..

I'm just feeling down and isolated and fed up of this. I can't remember stuff so keep getting really confused. meugh. I'll get there. Just feels like my whole body is on fire and is being stabbed with long, long knives whilst my bones are burning and it feels like my skin is peeling off from burning as well as electrical shock pains which knock me out and the icy whip screaming pain. Meugh. Just want it to stop hurting. Just want sleep. Just want an hour without pain!!! grrrr

Much love and thanks so much all of you

Frogga xxxxxxxxxxx

PS - did exams and nearly finished all work for last semester!!!!

Good luck with your Neurologist when you go and see him, I hope everything goes OK. Please let us know how you get on.

My pains increased because of the weather too, its not snowed a lot here but it is VERY windy and keeps raining.

Take care
You are in my thoughts

PS: I hope you get good grades in your exams. I have just started home tuition, my tutor is really nice and friendly and he allows me to have breaks when the pain gets too bad.