st thomas first appt results, bad newsxx

[londongirl]

:(

Yep its bad news, god i am soooo down, just had lupus nurse ring me and tell me my bloods have all come back n ormal, expect one which had to go to sheffied, dont know what this is though, even though i was expecting it, at the same time i thought, god surely this time, with so many things happening to me, something must show:( how can someone be soooo ill, and nothing show??? i spoke to lupus nurse as i am under Dr X? shes a lady rheumi,, there,,,, about it all i mean the nurse that its, i said i knew this would happen, i then crumbled what now? i cant take no more? even though i am on plaquenil, i cannot cope, and wait until may 07, i did tell her that i had faxed across list of symptoms that i forgot to take the day i went for my first consultation there, so at least dr X has got that, but as i said to her,,,, i just cant take it, i asked will she treat me on my clinical symptoms, etc? she replied what was the last thing the dr said to you i said she said she would carry on investigating,,,, she said then thats what will happen, but i replied i cannot wait until may 07, my gp does not know how to cope with me, and i am getting worse,,,, she said the trouble is that different doctors there treat differently, like she said Dr Y would treat and dx lupus on clinicial presentations and criteria, if neg bloods, but some doctors do not? she said they all have their different ways, she is not sure what mine is going to do but she will speak to her when she comes back from washingnton cos that is where my doctor is at the moment, i told her that i cannot even go out now without someone coming with me, cos knees keep collapsing and my memory just goes, and the constant pain, she understood, she has promised though to try to sort something out for me and speak to dr when she comes back,,,, she said the it can take years, but unfortunantely i cannot interfere how each dr treats and their ways, so god now im thinking is she going to help? is she going to rule out possibillty of lupus cos of bloods, etc, i am just in a sta te, not knowing, i will lelt you know what happens next week when i hear anything,,,,, but god i just do not know what to do now, its soooo awful, if anyone has had or ever ben under dr X, at st thomas can you please let me know,,, esp if bloods ect were normal, can contact me i will be very gra teful, thanks sooo much, or anybody can offer any advice to me will help, well going now, got to take yet more pills, and lye down cos soooooo tired and i feel so ill, bye for now, thanks for listening lizxxxx

[Christine UK]

Ok Liz....you need to take a big deep breath....calm down hun....
Right it isnt the end of the world,they havent said be on your way we wont see you again....what they are saying is that at the moment they cannot give you a def dx... at the min....they will still see you and of course are not going to see you wracked with pain...i know so many ladies without positive bloods who are treated for lupus...i am afraid its finding the dr,s who are prepared to treat you for lupus if they go on symptoms and not positive bloods.
At the end of the day you need to be on treatment to stop you having dreadful pain etc you are at the min.
If it comes to it and they refer you back to your gp then you need to get a local rheumy sorry if you have posted about this before but my lupie brain etc....
big hugs liz please remember you are NOT on your own if you see my post about a friend i went with to an appt yesterday you will see what i mean.
meanwhile please continue to keep a symptom diary etc...hugs my friend x x x

[shannon34]

Oh nooo...I was afraid that we would both end up in this predicament :-( I called today to get the final results of the drvvt and dDNA that they did and also the rbc count in my urinalysis that was redone and no call back as of yet. I fully expect that they will call and tell me "nope, everything looks real good and all results were negative!" Like it is great news. It would be great news if only we believed it to be true and weren't feeling so awful. I think you have one good thing going for you and that's that you have been prescribed the Plaquenil. What I wouldn't do for some of that! Just want to send you a hug and say that I know what you are going through and I hope that someday soon this will all be behind us and we will get what we need.

Shannon

[gingertoni]

londongirl I am sure it will be fine, my Mum was under St Thomas's and her doc did dx without ps. bloods (not sure of the name though).
I am in the same boat with my old rheumy, except she would not even treat my symptons other than painkillers. I am now going to St Thomas in a few weeks, to see the same doc as you, which is what I had wanted all along, we should keep in touch and maybe exchange notes?
My experience of the NHS in general is that if your are insistant enough you can get somewhere, if you are having a bad day when you go or when you speak to someone on the phone, is there someone you can get to go with you or speak on your behalf? (A pushy forceful person can do alot, but also someone who can listen to what they are saying, I know I always miss things, may help).
Hope this is of a help.
Anyway good luck, keep us informed

[Lily]

Hi Liz

:hugbetter:

I agree with Chris, its not the end of the world by any means. You are concentrating on the negatives, try looking at it from another angle.

You have been started on Plaquenil. Thats going to take some time to kick in and should help relieve a lot of your stuff (((((((((Liz))))))))))) so things wont always be as bad as they are now. And thats 2 docs that have prescribed it for you, the Dermy and the Rheumy, so both must think you have a connective tissue disease of some sort. She even sounds like she is definitely leaning towards Lupus by her statement that she would have expected with all the evidence pics etc. that your ANA and dsDNA should have come back positive. We dont always perform on cue, not all of us, I had overwhelming evidence but negative bloods at first too. But my doc never ever dismissed my concerns, how could he with what he had in front of him? Same applies with you I feel, they just dont feel comfortable calling it without some abnormalities in bloods besides that one time anticoagulant. Things will fall into place and I must tell you that I had to wait to start Plaquenil until they did start getting some blood abnormalities that looked like Lupus so you are further ahead than I was after your first appt.

Hang in there and try and focus on the good things that came out of this and also the fact that yes May is a long way off and its unfortunate you have to wait that long, but at least you can ring the nurse and she will inform the doc should things deteriorate further for you.

Its far better than being sent on your way, with no meds, no follow up and back to square one.



:hugbetter:

[nicky00]

I understand that is what I want with a positive diagnosis and the help that goes with it.

A friend of mine was diagnosed at St Thomas' 8 years ago. Before that she spent a year having her Rhumie in Brighton try to disprove the positive blood tests for Lupus. Can you believe that!.

I have heard that St Thomas is the best place for diagnosis where Lupus is concerned...just a rumour not fact,

What your feeling is real. remember you are ill and you will find out what is wrong. Its so tharwting to feel left without anything to hang onto.

Remember they want to get it right. Yes go with somebody else who can fill the gaps and remember what is said.

I come out in a jumble, my mind is generally scrambled, and it all sounds scatty and moany to me.
I am going to take somebody with me.
I am also dreading being told I havnt got lupus.

To feel down about everything is a normal reaction to what is going on.

Hang on to something to keep you focused. NO not the doctors leg.

By the way I love your picture it makes me laugh so. Tell me you dont look that bad?:eek:

Soft hug
Nicky

[babybaby]

Hi Liz,
I also had an app at St.THOMAS Hospital with Dr.X. She completely dismissed all my symptoms, as I also had negatitive bloods. That was last Jan, and I have to say I left that appointment so upset, angry,and unlistened too I cried all the way home. I know that St Thomas Lupus unit does fantastic work, I just felt so uncomfortable with Dr.X bedside manner that I have not returned. It would be her that I would have to see. Thanks but no thanks!!! Instead I have been visiting my local hosp rheumy, and after many appointments and further medical problems, he is now believing my symptoms and feels that I have SLE even though my bloods usually show neg. It has taken this time for DR. to get to know and see how Lupus affects ME. All I can suggest to you is to keep with a rheumy who not only knows about Lupus, but also one you can see over a period of time. It maybe that you need to visit Dr. X on different occassions so as she can get to know how your Lupus affect YOU! I hope for you that you are able to find a rheumy that will LISTEN to you as I know only to well how upsetting and negatitive these appointments can be.
Nataliexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxxxxxx

[londongirl]

:)


Hi there, just wanted to say, thankyou all so much, it was kind of you to take the time to contact me, and make me feel so much better, i have taken all you comments and advice on board, which has help me all so much, i think the trouble with me is that i feel soooo ill, and cannot get my head around the fact that you can be like this and yet nothing show, its sounds terrible when you want a diagnosis, cos at the end of the day, lupus is a chronic illness, in one hand i do not want to have it, and yet in the other i want to be told i have, how mad is that????? but deep down i know, in my heart of hearts this is the trouble, its my whole life has been turned upside down, by physically and mentally, by this, and i think it is hard to come to terms with that, and especially more accept it,,,,if that makes sense, so once again ladies thanks so much, you are all so special, and wonderful people, so take care, ((((hugs)))) londongirl, xx liz

[aggscott]

Hi Liz,

I read over your post and I could relate totally! I too just today received the same call frommy Rhumey-your labs are fine, we didn't fine anything. I have only a high ANA and that's it.
From my symptoms she too started me on the Planqueil and Motrin for the swelling in my hands and feet.
I wrote a post right after I received the call and it was just like yours! I was so mad and sad at the same time...How can nothing be found?

Maybe in time is all I can think

I hope your feeling well and you find those answers your looking for someday..


Aggie

[Tallulah]

Hi Liz, Can't add much to what has already been said except to say that you have already been diagnosed with a connective tissue disease as your Dr. started you on the plaq. Which one is not important at this point but they are saying yes, there is something. I have had a positive ana for 5 years and many symptoms and only have a diagnosis of fibromyalgia. What I wouldn't give for your diagnosis so it would validate to others what I am feeling.
Take care and hope you feel better soon,
Hugs, Tallulah

[londongirl]

Hi everyone, just to say thanks for your help and comments, have taken everthing on board, and am doing this what have been mentioned, so once again thanks for your replies much appreciated, ((hugs))) londongirl,,, liz,,,