Just had my first Rhuemy appointment ! Only taken 13 years to get there!
The last few months I've been on a serious mission to get to the bottom of my condition/s
Been backwards and forwards to Gp with all my various symptoms over the last 13 years,finally when I moved I changed Gp and I think I made a breakthrough! I took a list of my symptoms and my husband for support ( its actually because I get brain fog and can't remember a word of what I said or he said!) the first thing the doctor said was, "Lupus,"have you heard of it?" Yes sort of I replied,hooray I thought! We have a doctor who knows his stuff.I went for various blood tests , referral for gastroenterologist ,ultra scan. Blood test showed severe low Vit D deficiency , had a injection at surgery,prescribed more vit d tablets,Amitriptyline ,Gabapentin ,codeine sulphate and a request for ANA test.
So,ultra scan, they had trouble seeing what they needed to see, resulted in having an internal camera!
ANA results "normal".
Still suffering,flaring of joints and days/week of debilitating pain, alopecia,mouth and nose ulcers,rash,bla bla.
Weds 12th June. First appointment with Rheumatologist, didn't see who I was meant to see,Dr Da Silva,or the replacement I was on the white board to see,Dr Rose, I saw another doctor DR Rahim!
Initial thoughts not so good,confused.com
Dr asked me a few questions and looked at my list,giving me praise for taking it as it saves time.He then asked me a strange question,"if i said you have Fybromyalgia would you want a second opinion?" "yes "i said, a doctor mentioned it to me before and prescribed tablets,and i dont think it is that.I was sent there and then for blood tests,and chest X-ray,then wait for appointment based on the findings. Meantime I had an appointment Saturday, to have an Endoscopy! Worst thing I've ever had the misfortune of experiencing ! Won't go into too much detail!
They took biopsies from inside my stomach. Results to follow.
So here I am, waiting again,hoping that the "experts" can find out what's going on with my body.
This feeling of,wanting a diagnosis ,wanting to know what I have wrong, it's oh so common and so ignored. It makes me so sad to think,so many of us suffer not knowing, and they say we should educate ourselves and not be ignorant in life? well im trying my best here not to be and i know so so many others are too,and that's just Lupus, there must be others with different illnesses on different web sites too!
We need to stick together .... Safety in numbers!
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Lupdaloop
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its weird one.. originally was diagnosed in flammatory arthritis. fibromylagia.. rhuem now considering lupus...?? I HAVE A POSITIVE ANA test?? dont know were I AM but hurt like hell and so tired/ fatigued../keep on fighting I WILL JOIN YOU !
There's a definite problem with getting a proper diagnosis, I am not going to stop until I find out the reason why? We are all suffering here I shout!!! Why would anyone in a position of "knowledge" in such areas not want to help us? Wouldn't You? We shall keep on trucking ..... We have to!
Hi I do know how you feel.....although it only took 7/8 years for my diagnosis!!! I was told I had 'fibro' but was just getting sicker and sicker, physically sick for about 5 times a day at the end-mouth ulcers, that just would not heal (I was beginning to think that I had mouth cancer-as I am a smoker)was on the verge of losing my job. I had been to St Thomas's during 2010-but again was told it was 'fibro' and carpal tunnel syndrome, eventually got a different G.P at my surgery to listen and he did more blood tests-was sent to see a Rheumy at my local hospital and at first he said possible SLE, and now he is sure that I have it as I have responded really well to treatment, he says I have 'double stranded DNA'- I asked why it had not shown up before, but was told it probably was not there??? I did not realise that our DNA could change, but apparently it is the cells within it that change??!!! And all the Rheumy will say is that 'we got there in the end!' Anyway, now feeling a lot better-still get very tired, but I think that is something we have to learn to deal with and allow for. Still have bad days, but my joints are just sooo much better now!! So keep on fighting, and am sure you will get there in the end too!! (I also took a diary along on my first visit with this Rheumy-which he said was very helpful) Good luck Julie xx
Thank you Bam , you said those magic words...... I know how you feel! And I believe you,it's not that I wish this awful condition on anyone,but if only every specialist "knew" how we felt ! Now wouldn't that be easy,half the battle won!
I think the changes are due to Lupus /Autoimmune being a"mimic" ?
I'm trying to educate myself in this as much as I can, I just wish specialist were not so over worked and had more time to specialise!
I'm so glad you have found a little comfort and things are sure to keep improving.
I hope that you soon get answers, and importantly can start to get treatment that will have you feeling better. I empathise with the time it can take for proffessionals to listen, myself I was treated for post natal depression for 9 years before "suddenly" being diagnosed with lupus! I do think that part of the difficulty in diagnosis is that there is an element of putting the pieces together over a period of time, and that those pieces can be all over the place, and because our main port of call is the gp, the pieces if the puzzle might be missed for a long while. Not great for us though, I was threatened with a section and ect by a pychiatrist because I wasn't getting better quickly enough, well I never was going to with them treating me for the wrong condition was I! Wishing you well, and hoping you get answers soon, take care xx
Thank you flutterby , it all rings the same in my ears, I can't help thinking that need to re train as a specialist! I know that Too many people are suffering, it's just the ones with a big mouth like me that remotely get heard. Can't help thinking it time for change , we are no better off with our health care service if it isn't functioning as it should be, soooooooooooo frustrating!
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