Advice please - I dont understand diagnosis or lack of ....

[LULU85]

Hi everyone

I was diagnosed with Graves disease 2 1/2years ago and around the same time started with joint pain. After a long battle I was finally referred to a rhuematologist and was first told the joint pain was caused because of the graves disease. I had a thyroidectomy last year and the thyroid is now cured with medication however 3months after the operation my joint pain and symptoms became a whole lot worse.

The rhuematologist first thought I had Bechets and I started treatment for Bechets which did nothing to help. Then I was told they thought it was a lupoid type of arthritis and started me on plaquenil. 3 months after that appointment I was told I had some anti-bodies which meant I had connective tissue disease with lupus characteristics (great I had a name for this mystery illness) so Azaothriprine was added to my medication.

Roll on 3 more months and the joint pain and massive mouth ulcers (more like blisters) I was experiencing are 10x better which is great but the appointment left me more confused. I was told I dont fit into a box of having lupus or connective tissue disease. I have a positive ANA but was told that could be due to having graves disease or what a 'normal' person can have and all my other bloodwork doesnt show anything. I was told I have symptoms of alot of different things but not enough to say its defiantly x y or z. I was told other people have this but what do you call it? What symptoms do you need to get a firm diagnosis of either lupus or connective tissue disease? Is it the blood work that you need? I dont want to have lupus or connective tissue disease but I do want a name for what I have and I feel so low after yesterdays appointment.

My symptoms are has follows:

Joint pain in hands, knees, hips and now chest (my chest pain is really painful everytime I breath at the moment)

I dont have any swelling and bloods dont show swelling

Fatigue (Im 27 and I think my 80 year old grandma has more energy then me)

headaches which last for days and mean I have to go to bed as so painful

mouth ulcers (like I said before more like blisters)

Rashes on my face, hands and chest

symptoms are worse leading up to a period

difficulty swollowing

hair loss (no bald patches but more hair loss then what is normal for me)

muscle pains (like I have the flu)

abdominal pain

From time to time one side of my face goes totally numb and painful

Unexplained Anxiety

Will this ever progress into a definite illness or would it have done that by now? Is it because I dont have the bloodwork why they cant give me a derfinate name? and will this ever change?

Im been moved to be seen by a connective tissue disease team which I dont understand why im seeing them if they are not confident that is what I have?

Also should the medication be helping the joint pain by now? It is alot better but when the weather was stormy the other day I was in alot of pain joint wise. Does medication totally get rid of symptoms or jsut improve them?

Apologise for all the questions im just so confused and fed up of not feeling well

Thanks

Lulu xxx

[Thaddeus]

Hello Lulu

This doesnt sound like a lot of laughs. but it does sound familiar.

It wouldnt be fair for anyone to say one way or the other that you have lupus, but many of us eventually wound up with out diagnosis after years of being told we have this that and the other - or infact that we had nothing at all.

Unexplained anxiety you say?- I think that you have explained it very clearly.

Where are you based? If you have access to St.T's then that is where I would feel safest.

Good luck.

[tanya2k458]

Hi Lulu

sorry to hear your having a rough time, i went through the same sort of problems myself getting diagnosed, first being treated for RA now Lupus and im still not convinced myself 3 years down the line.

The problem is i don't think half the doctors know themselves as half haven't seen it and others don't have a clue or don't wanna listen.

Reading your symptoms i would say some are linked to lupus but if looking up other diseases they probably all have the same symptoms. I was told by rhemy that the blood test done gave the answer but whether thats right or not i couldnt tell you as im still learning my way around this.

The best advice really is to keep on their backs to get answers, i really hope you get some soon!

best of luck xx

[LULU85]

hi Thanks for the replies. Unfortunately I live miles away from st Thomas's and have two small children and cant drive so the chances of me going there are zilch.

I had a call from the rhuemy yesterday to say my white blood count had dropped dangerously low and I have to stop all medication and have an emergency blood test on monday. Feels like another step backwards!