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light at the tunnel

488 Views 5 Replies 5 Participants Last post by  w3nDy
hiya all
just some info about what ive gone tho and try to give some hope to us all who not dx

about 4yrs ago i feel ill with sypmtoms like stroke as my right side was affected so gp test me for a stroke and test was all normal. then gp done some reflex and muted somethink still dont now today wat he said lol but then he fax aletter to our local hospital for me to see a neuro.

got the apoinment to go see him - he done his reflex, asked me stuff then order bloods test and mri brain and spine. hubby asked him what it could be and he aid he dont think its a brain tumor
i waited about 4 mouths to get the results from mri yeah bad, hay but good, meaning it was not bad. when we see him again he said mri was normal as only has some spots but thats normal on the T2. then he said my folic acid was low and asked about what i eat i went abit mad saying why didnt he wright to my doc about the folic acide as i could have been put on then 4 mouths ago as i had myclones in my arm and tremors every day like was hard. the neuro even wanted me to email him each day what i was eating and he wanted me to go on ant depressents to build my appite up lol omg i dont need a tab to eat.
it was left with me on vitmins asprin and folic acid and emailing what i each eat dayly lol stuiped hay
not long after that, i had a myclones attack were could not talk walk nor site still and omg the faces i was pulling so my hubby took me to ER and the lady doc who saw me was shocked with how my body was acting and rushed me tho. all the nurse come in stucking needles in aw i hate needle i was getting abit scared as no one was saying anythink just putting needles in.
my hubby asked what was going on and they said they was going to keep me in as there was no neuro on at the weekend. my hubby asked me if i wanted to stay but i said no i wanted to go home and try and rest as the muscle was makeing me so tired and there was nothink the docs could do as no neuro was there. hubby sorted got that i dischared myself and the myclones lasted for 4 day and even to this day i wise i stayed so that the neuro had seen what went on

on the monday my hubby rang the neuro as i still couldnt talk with the contraction in my nect keet cutting my talking off about 4 weeks later i was sent to hospital for a week witch i had a LP and mri with dye wednesday and was meant to get results on friday but didnt so went home

finaly got my next appoiment to see neuro and he told me LP normal leasion on T2 but still normal but he thinks i have lupus so was sending me to st toms and he told me he was leaveing as well so i have a new neuro

finaly got appoiment to st toms under dr cruz but was not seeing him off we went the doc i see said i might have mild lupus he order bloods test and said come bk in six weeks we had to w8 9 weeks np as getting used to w8 heheh
9 weeks come and went to get results got told all test was normal and have i been tested for HIV? well no, but why would i ? safe relationship, kids and no blood tranfuion but anyway he dischaged me and i went got the HIV test done just so they cant throw that one at me

then i got a letter from the new neuro to go see him. he was really horrable total dimised all what had gone on with all the reflex test he hurt me rushed then and said nope your all normal and was tell me about this woman who has eplese attackes but the test are all normal saying thats all in her head. omg i went mad and asked him ok if you think i mad send me to get tested and he said he wanted to test me for stiffman sydrome but he dont think its that and he order eeg and emg and he said after that he would send me to get checked for mental if they come back normal

went home and tho if i going to be a nutter i need it sorted out now as i have a family well.
i rang around found a doc that would see me with out the other test so rang the neuro sec and got them to refer me to them

i got the appoment to see if i was a nutter walkine in nice lady and she told me its not in my head and i am total normal and she was dischanged me

i had the test done eeg emg and bloods for stiffman sydrome all was normal and i just didnt want to see that neuro again as ne was **** guy heheh

told him i wanted to stop seeing him and he was more than happy to dischage me as i had a good moan on how he was and he even then said about he tho they would not think i was a nutter. stuiped guy how the **** do they keep there jobs lol

anyway i stayed away from the docs as all the time i was under them they didnt help i just got on and hubby so great a year later

i thought i email a top doc who know about lupus really didnt think he email me back or email me saying well your ANA was low and you have been tested for it before so no point carrying on

BUT omg he didnt! he took note on everythink and didnt dismiss me. he order mt records, went over them and wrote me a letter telling wat he has done and saying with the test i have had done that i might have mild sjo syndrome and he would like my gp to referr me to him and its on the nhs, so not trying to get my money. i would have paid tho so now w8ing to get appoment from st tom with the doc who cares about us. its not just about getting dx its about feeling that they want to help even us hard cases

we had prolems just as musch as someone who that can see whats wrong with them
so with all of you going tho what i have and more, just take brakes time to time cos **** doctors dont help. stand up with wat you feel as you know your body better than they do and dont get stressed, as that will help then fob u off. be cool carm but fight every time you get kicked down take a break and when you ready, go back to find out what is wrong

sry its so long just hope it will help and goodluck to you all

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:)Hi Wendy,My,my,you have been walking a long,long road, haven't you? But you sound like you ended up a much stronger person, for having done that. Yes, resting and pacing yourself are like you said, two very good things to do for yourself. I am so happy that you are going to this
new Dr. that you wrote to. Who would have thought that you would have actually get an answer to your letter. Is this new Dr a Rheumy? I think that you should be very proud of yourself for the way that you handled this, and I
just know that it will all go fine. I am keeping you in my mind, wishing you all the best. Let us know how it goes,
as we are here to support you. Keep the sunny side up.:wink2::rolleyes:
Well done Wendy!

Your definately getting there!

Please dont worry about your writing - If I can understand then others will too!

Youve done a brilliant job in getting some answers to your health!

Hi Wendy,

And I thought I'd been through **** :eek: !!!!!!!!!!!!!!!!
Sometimes I think I am a magnet for those kinds of Doctors but I think the ones you have seen need the Stinker-award!

Keep us posted on how you are doing. And by the way, I admire your grit and stamina!!!!!!!!!

Hugs to you

Hello Wendy

Your story is quite remarkable, everything you have been through and your inglorious encounters with the medical profession most of all your sheer determination. The most amazing thing is the response of the lupus specialist you wrote to, one of the top specialists in the UK and possibly the world.
He is well known for his kindness and care but this is way beyond the call of duty and it's very heartening to know that there are such dedicated doctors. I hope you will finally get some answers even if it turns out your problems aren't lupus related which possibility I guess one has to bear in mind.
You couldn't be in better hands, I am sure of that.

I hope your appointment comes through soon

hiya all and thanks for all your replies and to answer some questions which you asked yeah i am going to a rhum doc
and i feel so safe in this doctors hands if he turns round and says i dont have lupus i will total feel that he knows what he means i have lost the trust in most of the doctors ive seen but after the years of finding the bad ones you learn what ones are the great ones too as they say theres always postive to negtive even in lab tests lol i feel good in my new GP she so lovely and feel happy who i am going to see so not in a funny way if they cant help with finding out whats wrong its not ready to show its self or its just the way my body is and i will just get on with a happy face cos i will not let it win and i know ive tryed all i can and seen the best rhum doc i do belive in fighting your cornor but not so it makes you even iller
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