Don't know what to do now - Please help

[tine]

Hi All

I finally tracked down my blood tests ( missing for three weeks)

ANA - Normal
DNA <10 normal
Thyroid - normal
Rheumatoid factor - normal

Good news in one way but not in another, Why do I still feel so #**#?

I have quite a few symptoms that meet the SLE criteria e.g Rash, muscle aches, foggy brain, Intense fatiege(SP) to name some. I went to my Dr today, was made to feel like a real nucience and told that as all my blood tests were normal that there was nothing wrong - I know that there IS and I certainly am not making it up for attention, there is nothing that I would like to do more than to get back to how I used to feel. I can't even have a good cry because my eyes are so sore and don't seem to have any water in.

Any suggestions what I can do now? - I can't change doctors as there is only one centre here and the doctors all share patients. I have no hope of being referred to a specialist of any kind now as I am just a time waster - Oh god - typing this has made me realise how bad this is, I can't go through life feeling like this. I don't even know if I should be visiting this site any more as I could be a fraud ....

Can anybody please give me any suggestions ...... I'm really desperate

Tine xxxxxxxxxxxxx
style_emoticons/<#EMO_DIR#>/crying.gif

[CarolMc]

style_emoticons/<#EMO_DIR#>/hugbetter.gif Oh Tine, how frustrated you must feel, I can hear the desperation. You are certainly not a fraud, that's for sure! Somone with more experience will be able to advise you Tine, I just wanted to show my support. Hang in there, a way forward will show itself soon.
Be well,
CarolMc.x style_emoticons/<#EMO_DIR#>/foryou.gif

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Tine, I know just how you feel, as do so many others. Most
of us have felt as if we had rocks in our heads. Lupus is not diagnosed
by blood tests alone. So don't put so much weight on them, they are just
a guideline to show the Dr. where to go, and where not to go. More
importantly, your dr. needs to know your symptoms, what they are, how
long have you had them, how long do they last, how and in what way do
they bother you, your past personal health history, you get the idea.
What you do is make a copy for yourself, which you can keep up-to-date.
And make a copy to hand him at the end of your visit and just say" this
is for you to put into my file, thank you.


Be well and keep posting, style_emoticons/<#EMO_DIR#>/cool.gif

[JazzGirl]

Dear Tine:

Please do not call yourself a fraud! No matter what you may or may not have you are sick and in pain. That is what matters! I have had two positive ANA tests and was told by the rheumy that she does think that I may have Lupus and yet here I sit alone in my apartment with body aches and so tired that I don't want to move. I am leaving my apartment about four times a month at this point and that is normally to climb into a car and go to a doctor of some kind.

Tine I know how you feel. I sometimes feel like a fraud too. With any illness in this category I think that it makes sense to feel that way. How can you not when you suddenly feel new pains and twangs that not even you can explain. I may be on the verge of being diagnosed and I still feel as sad as I felt a year ago when I had no idea what was wrong.

Please do remember what Half said to you Lupus is not diagnosed by the tests alone. I know that it can be very frustrating I have also been in front of doctors and had them stare at me as if I was insane and a liar too.

I think that it is time that we stand up for ourselves. Keep going back to your doctor and insist that he refer you to a specialist. Take Half's advice and make sure to keep track and keep him informed of all of your symptoms. If he points out that he believes that you are ill due to depression point out to him that also happens to be a symptom of Lupus.

Even if there is only one clinic can you go to a different doctor in the clinic? Keep on trying Tine! Keep on insisting! We deserve to be treated like human beings! We deserve not to spend every day tired and in pain! I will be thinking about you! Please do not give up!

Love,
Liza style_emoticons/<#EMO_DIR#>/foryou.gif

[jude mack]

Hi Tine

I know you are very frustrated and upset, but keep going back to the doctors, eventually they will find out what is going on. Don't think of yourself as a fraud for how you feel, there is nothing fruadulant about being ill and in pain. It's just going to take more time to figure out what is wrong with you than you may have expected. Allot of us have felt the same as you, before getting a dx., it's a long hard road. Please listen to Halfpint, she has given you good advise, good luck to you and try not to be so hard on yourself.

Take Care
Jude style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif

[helloos]

My thought is this. Can they at least treat your symptoms?

[tine]

Thanks all for your support - really means a lot.

I'm really not feeling strong enough to make a decision about what to do - I do know that I can't go back to my GP. I just can't cope with the look on his face when I walk into his office (Oh no not her again........)

Just wanted to pass on my thanks, I don't know how I would get through without the support of all you guys -
I hate the thought that if nobody dx me with anything except hypocondria (SP) I don't have the right to come onto the site.

Love to you all

Tine xxxx

[jane1]

style_emoticons/<#EMO_DIR#>/hugbetter.gif hi tine....please dont think you dont belong here...this site has kept many people sane style_emoticons/<#EMO_DIR#>/hehe.gif i havent been on here long..but i read everthing..arm your self with lots of information...i was lucky..well not but..was cos i got a DX pretty early......please keep on harrasing your GP...and keep on coming on here for support...they are all fantastic.. style_emoticons/<#EMO_DIR#>/bigsmile.gif

jane style_emoticons/<#EMO_DIR#>/foryou.gif

[helloos]

Tine.

It sounds like you need some pep talk to get back to your gp and not care what he/she thinks about you. This is your life and your body so you need to do it for you and not care about the gp. That is their job. Be persistent and say to the GP you probably hate seeing me again but I am at the end of my rope and if you can't help me who will? Be honest and tell that GP that you hesitated to go because you think he/she things you are making it up, etc. AT least you need to be treated for your symptoms while it all gets sorted out.

I read this saying from somewhere .... the task ahead of you is nothing compared to the power behind you.

Sending hugs !!!

http://i78.photobucket.com/albums/j92/JustLynne2005/Sending%20Love/hug.gif

[tzookm]

style_emoticons/<#EMO_DIR#>/hissy1.gif Hey, don't begin to think you are a fraud. Believe me I am living that right now. What I am doing is keeping a journal of symptoms and keep hammering at the doctor. It sounds like Fibro, but far be it from me to know the answer. Good luck and keep squeaking( you know about the squeaky wheel and all)
Tess

[Suz81]

Tine,

Would it be possible for you to see another GP? It took me 6 years and several GPs until I finally found one that took me seriously. I think if I had been more persistant I would have been able to start on my meds sooner, and not suffered so much for so long. Please don't give up, try another Dr. You might find one that has seen similar patients before and will recognise your symptoms and be able to help.

Good luck and best wishes
Love and hugs
Susie
x x x

[RachelSut]

I completely agree with Susie, my GP was sympathetic but my consultant was c*#p!!! He just joked off all my symptoms and said my bloods were fine. I thought i was cracking up!! style_emoticons/<#EMO_DIR#>/wacko.gif PERSISIT I got referred to another consultant further away who did more in depth tests and LISTENED to me and now I've got my diagnosis style_emoticons/<#EMO_DIR#>/smile.gif at long last-after 5 years of suffering thinking i was losing it style_emoticons/<#EMO_DIR#>/sad.gif

Do not give up, you are not a fraud, the GP is paid to do his job PROPERLY, camp out in the surgery if you have to

Good Luck style_emoticons/<#EMO_DIR#>/clover.gif

Rachel

[tine]

Hi all

Sorry I havent replied before - I lurk the boards all of the time but since my last post I havent felt capable of posting a sensible message- went totally NUTS ...

Anyway just to let you all know that I am taking the plunge this morning and visiting my GP. Oh my god I am soooo nervous about it, just hope that I don't run away at the last minute. :eek:

Thanks to you all for your messages of support - you gave me the courage to arrange the visit. Will let you know how things go (if I actually get there)

[tine]

Update on appointment --- Awful, wish I had cancelled it -- need to have a really good cry so will leave explanations till anothrt time. I was starting to cope so well ..

Why?????

[helloos]

Oh boy. I am sorry that your appointment went unwell. I hope that feel a little better and come back on here and talk about it.

Please don't feel like you have no one to talk to. We understand here what you are going though. There are some good doctors out there but then are some other doctors who just shouldn't be practicing.

Hope that you feel better. Hugs sent your way.

[appleorch]

hi just to say dont give up i have had a mixed connective tissue disease for 11 years now and still no diagnosis. got a rhumie that i see evry 6 months went with a list of symptoms 12 months ago all linked to lupus but still i havent got it.
like u i feel like a fraud more so with family and friends as i look fine to them but feel s***
i was put on plaquenil nearly 12 months ago now, i also see a counsellor for anxiety.
maybe one day ill actually have a diagnosis but for the minute its just regular bloods tests and just put up with the symptoms. good luck to you. and i wud deffinetly go back to ur doc make sure u ask to see another one in that surgery surely there is more than one doctor in the surgery.just insist on seeing another one.
heidi

[Joandublin]

Tine (((((hugs)))))

Just wanted to stop by and say I am so sorry your appointment went bad. Please let us know how you are.

Thinking of you
Luv n stuff
Joan:)

[crm1209]

Tine,
I'm not sure I can add anything to the great advice others have already offered. I HATE it that you feel like you can't face your own doctor again -- what a sad statement about that doctor! I did have one thought.... You mentioned that you can't cry because your eyes are so dry. Was that metaphorical or actual? If really dry eyes are part of your symptoms, perhaps an eye doctor might be a starting point for getting some help (Sjogrens?).

I agree with those who've encouraged you to at least ask your doctor if he would be willing to help you by treating your symptoms while he waits for whatever this is to ultimately show up in the lab tests.

Please don't feel like a fraud; many of us here have been exactly where you are (I once had a doctor tell me that all I needed to do was get more exercise!). Whatever is wrong, you've come to the right place for now.

Renee