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230948 tn?1235844329

fed up, not been seen at the neuroscience hospital now!!

Found out today that after the mess of my dr refering me to a neurosurgeon and not a neuro i had found my old neuro sec at the neuroscience hospital so asked my dr to fax her my details and see if i could get seen at his clinic next tuesday there were only 3 people on his books!!

he has decided not even asking me that i should be seen at my local hospital under him but at the crappy old hospital where i bet he wont do contrast or MS protocol as its not east surreys way to do that costs to much money, so here we go again i had hoped that if he didnt know what i had he would refer me to the many differnet types of neuros at the hospital and being a bigger hospital who specialise in neuroscience they would do everything the right way!!

so let down and alot of waiting i could of asked my gp to just refer me straight to him in the begining but i wanted to go to this hospital not to see him!! how can they just make these decisions without even contacting me.

i feel sick inside seeing him again but i will be strong insist on full brain with contrast and spine and not let up till i do and want to be tested for MG and other mimics of MS.

still maybe its good i dont have to travel i just pray this will be the end of it and find a way to slow this down please as i feel i cant take much more.

sam
8 Responses
634733 tn?1316625992
I have watched the posts over the last fewe days - as we do and you sound really fed up today, I do hope it all goes well for you, getting help in the UK really stinks sometimes unless you are a classic case. My friend has had RRMS since she was 19, she is now 50 but she saw 6 neuros and was finally dx in a teaching hospital in London.

I don't know how you cope with young children too. Try to stay positive eh? although I know its not easy.

I have 2 daughters your age and I just want to hug you so sending hugs from across the UK
Pat
x
230948 tn?1235844329
Thanks pat,

I am sorry if i am bringing people down i am not always blue lol

things just get on top of me and i know how this goes and i've been there many times before like your friend and this was the best teaching hospital on neuroscience there is st georges in london and now i am back at my old local hospital who are struggling for funds as it is like they are going to waste any more many on me still i have faith and maybe God has a surprise in store for me its not that i want MS its just i want to know why i am getting worse he said he could not find anything 2 yrs ago but my sx were mild and now there not mild so am hoping he will find something or he can give me some medication to slow this progression.

i will try and cheer up thanks for the hugs hun.

sam
634733 tn?1316625992
I wasn't suggesting you cheer up - just feeling the pain with you.

Take care
x
Avatar universal
I'm so sorry you are going through this.  Being in limboland *****.  Lots of prayers that you get some help soon.
648910 tn?1290663083
Sorry sam.  I know you had your hopes up :(

terry
230948 tn?1235844329
thanks all

and pat thank you hunny all your thoughts mean alot to me.

sam xx
572651 tn?1530999357
Sam,
Do you have any recourse at all?  what about the doctor that did the first referral that ended up being the neurosurgeon at the hospital you prefer?  This all stinks and there ought to be away to clear up the mess.  I don't understand how you can get things like the mobility van but not a good doctor?  :-)

later,
Lu
230948 tn?1235844329
Tell me about it its the way this system goes really, i guess as i got the dx for fibro a yr ago i got my disabilty and i am thankfull for the new mobilty car which is amazing but now three dr have said this is not fibro and got my GP to refer me to a neuro now she said i could have had my old neuro back but i said no and i wanted this teaching hospital in london but she messed it up and i can get her to persue with this but it means another 8 week wait this way i guess he has all my notes he is my old neuro so knows how i was and how i am but last time he never gave a ten min neuro work up MRI done without contrast on a low T MRI i just so pray i will be strong enough to tell him i want brain MRI contrast and spine and if still negative to have an open mind to the sx i am having as he is so black and white.

thanks lulu

sam xx
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