St Thomas'

[larissa]

I had my first visit to st thomas yesterday.

My Consultant was absent at last minuite but they said that i could see another doctor .

I was in there for ages , talking and an examination . He was a lovely doctor and really listened and even had a sense of humour !!!! He did this weird test , putting paper in my eyes ! but when he took them out he said they were "bone dry !"

Anyway i remember thinking ' thank god i am not wearing a G string '!! as i lay there in sensible knickers with paper sticking out of my eyes !

After , i sat there wishing and hoping for a diagnosis , as the doctor explained that i definately have some symptoms that point towards Lupus but it is not enough to say i have or i havent.

First of all i couldn't help but feel dissapointed, but this feeling didnt last long as i knew how thorough he had been .

He sent me to have about 12 or more tubes of blood taken ! ( i am not joking ) and i have to go back in March and this time will see dr Senna.

So............... Coonnective Tissue Disease is where i am at for now.

Although i want a specific diagnosis , its not for the want of trying !i can learn to not know for now , as i know that St Thomas' go through everything with a fine tooth comb and i have recieved the best treatment with no stone unturned!

I will look forward to March now and accept that i may or may never know ? i'll just have to wait and see what tomorrow brings !

Oh yeah, thanks to all who sent me good luck x

[browneyedgal]

Coincidently I was at St Thomas too yesterday and I did wonder how you got on. So glad it went well for you. Spot on regarding the amount of blood they take too! xx

[larissa in reply to browneyedgal]

you too eh !??? Are you waiting to get a diagnosis too ?

I've never had that much blood taken all in one go !!!

[Purpletop]

I LOVE it, the G-string thing is hilarious! I know what you mean, though, I had a similar experience when my consultant wanted to examine me head to toe for rashes, etc. I thanked God that I had my pedicure done few days before! I thought of my mum, she always keeps smalls especially for visits to the doctor, I used to laugh with her about it.

I'm glad you've finally seen someone who took everything seriously. The paper in the eye is a test to measure whether your tear ducts work properly, if the paper is dry, then your eyes are dry. You must be so uncomfortable with that.

Take care till March, as you said, you've done all you could to progress to diagnosis.

[larissa in reply to Purpletop]

you've gotta laugh sometimes ! I might wear shorts next time , i'm hardly a size 10 !

[Sher78]

As Purpletop has said, the paper in the eyes is 2 check 4 Sjogrens syndrome. Sounds like they were very thorough with u & I bet that even though u may not have got the answers u were looking 4, I bet u feel so relieved that some1 has actually taken u seriously. All in all I would say it was an eventful day 4 u x

[larissa]

Yeah, i'm really glad i went x

[MandieR]

Hi Larissa, am so glad to hear that you felt listened to. I too felt so different when I went to st Thomas. And something like you said too, that the Dr (I have only seen Dr Senna) was very intetested in EVERYTHING I had to say, he too has a great sense of humour, makes you very comfortable, and that you really matter. Such a strange.

So...........lets hope he is the one to sort us out as best we can be xxxx

[talula in reply to MandieR]

Who and what is Dr senna please? I was so unhappy about Dr D Cruz replacement, professor someone I dreaded the next appointment. After that appointment I cancelled the following one I thought " we'll he doesn't seem very interested " but my partner wasn't very happy about it so I have another one in April.

[browneyedgal]

Larissa I was diagnosed twenty years ago and have been in Dr d Cruz care for the last seventeen years. Have a flare at present so thats why I was there. Xx

[talula in reply to browneyedgal]

I used to see Dr D Cruz, then I was told he was leaving for a while to do research. Is he back?

I have seen the other chap professor something, was not keen on him at all.

Dr D Cruz was very good thorough and caring. I am back at. St Thomas's in April can I ask to see someone else?

[browneyedgal in reply to talula]

Dr D Cruz is curently working on his research papers. From what I can recall there is a new drug he is working on which, if sucessful, could be of great benefit to Lupus sufferers. I was slighly taken back when he said he was going off for nearly a year, (I was in the middle of a bad flare) but he assured me that his nominated replacement would be more than capable and he was right. Saying that if I had any other issues I always refer them to Kay Blacknall, the head nurse there, and she usually manages to get a response very quickly. I'm sure you can see someone else, just ask. xx

[Neverforget]

I am really pleased that you have found such a lovrly Dr who takes his time. In August I saw a rheumy for the first time since 2004/2005. In 2004 I was admitted into hospital as all of my joints became stiff and painful over a matter of hours and by night fall I felt like I had been hit by a bus. It was even too painful to breath. I had lots of blood tests. In outpaitients a month or so later I was told that I had positive ana and anti cardiilipids and antiphospolids. Other tests were positive too. Due to me having thick blood I was placed on asprin. I was told that although everything was positive for Lupus due ti this being my first incident like this that was probably a false positive due to a viral infection. I found out yesterday that I had also complained of hair loss and red scaley rash on my forearms. I forgit that I also had theses symptoms at th time. Since my discharge in 2005 I have experienced weight gain, hair loss on and off, red scaley rash, exhaustion, sweating on occassions and joint pain. Each time they said it was possibly post viral syndrome or exhaustion due to over work. In April 2012 my joints flared up and my red scaley rash looked more angry and had appeared on other parts of my body. My soles of my feet swelled up so much in May that I couldnt walk. Podiatry said it looked like I had some form of arthritis in my feet. I began to have stiff legs each morning too. I saw a rheumy in August 2012. She said that I had a connective tissue auto immune disorder and ckearly saw my swollen joints and rash. I was placed on plaquenil but had a severe reaction to it and was placed on mtx. I was taken off mtx in Dec and placed on methophenolate. I took it for three days and had to come off it due to side effects. Three weeks ago I had a bad flare as immune system had kicked back in due to being on no meds. I spoke to my consultant yesterday as I needed some information to pass to OT as I am going through stage 1 dusaplinary procedures due to being off for more than 10 days. My rheumy in August and through the two rushed 5 min appoinments since saud I had connective tissue and stated that all my problems since 2004 have been as a result if it toi. However yesterday my rheumy said that she has never seen my rash and that she never said I had connective tissue and doesnt know what I have got. A dematologist in Sept 2012 said my raah was part of auto immune. Rheumy has told me to see another consultant. I am gob smacked that I have been told this. I hope I find a rheumy like yours x x x

[lennox]

I have been under st toms for 13 years and they are the best doctors around they have really looked after me, the paper test is because lupus sufferers have dry eyes, and its just part of the test when they told me I had it I laughed because the name was so long, you will get ur results in time, good luck really hope u don't have it xxx