LUPUS UK
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"so that means I have lupus then?!"

Sorry to just jump in but I am shaken up as found out I may have lupus in the worst way. Sorry this is long.

Earlier this year I had a blood test which showed raised liver function, this led to more blood tests and the GP referred me to Rheumatology in June. I got an appointment for mid-August at which I was told I have Sjogren's disease, though the doctor didn't want to commit to that diaganosis until I had other tests. I provided a urine sample and also had a lot of bloods done.

As the doctor didn't want to give me any leaflets or much info about Sjogren's I researched it myself and when I found it's ususally present with other autoimmune diseases I figured straight away given how I felt I either had Lupus or Rheumatoid Arthritis. I have been worried sick since, and also suffered a brevement at the start of the year which has led to other problems like the risk of losing my house. I have been crazy stressed but it has only got worse.

Since my August appointment my breathlessness has increased, I've noticed how much hair breaks off when I brush it and recently I've had heartburn daily. I got another appointment for Rheumatology which was to be on 12th October and a few days later I got another appointment letter saying it was cancelled and would be 7th December. This second letter only had the date and time of the appointment, the department line was blank. Obviously I didn't want to wait that long for a diagnosis so I called an advice line at the hospital for the rheumatology department- this was just an answering machine service so I explained that I wanted to know my diagnosis. Today after still not hearing back I found another number to call which was listed as rheumatology but was actually referrals and bookings. They put me through to rheumatology at a different hospital in the city. I explained about the appointment issues and waiting that long for a diagnosis. The woman was a bitch about it all and when she looked on the system she said the October appointment hadn't been cancelled and that the December appointment was for a "pre-lupus clinic". I said "oh so that means I have lupus then?!" but she denied it and just said it was the name of the clinic.

I realise I'm rambling a bit but I'm in shock I think. I know someone who passed away from complications with lupus and my breathlessness has been worse today so it's got me in a bit of a panic to say the least. I don't know where to turn or what to do because the hospital are completely useless! I really want to make a complaint also but I don't know who it was who said the appointment was with the lupus clinic. I'm also wondering if that's why it was missing from the second appointment letter since I haven't officially been told yet. I'm besides myself with this. Sorry for the rant.

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Hi purple paisley

I'm not sure if this will help as I'm certainly not an expert in Lupus but I felt as no one had replied yet I would. I was diagnosed with Lupus and sjogrens almost 2 years ago. The actual diagnosis hasn't really helped me if I'm honest and I still understand little about the condition, hence I thought I should look on this site and sign up.

What I wanted to say was for now don't focus on getting the diagnosis.... focus on what's making you feel unwell at the moment. If you're feeling breathless under normal circumstances you would go to the doctors..... so ignore the fact you're waiting for diagnosis for now and book to see the GP and get that looked at..... one step at a time for now maybe?

Gemma x

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Hi Gemma right, also it helps to keep a health diary to discuss symptoms with your doctor. Have they prescribed any autoimmune meds yet? Don't overlook your symptoms because they can be quite varied, ache's, headaches, problems with skin, tingling, etc. Also see if there is a rheumy nurse to discuss it with & if you can be put on a cancellation list. Good to go to the GP as suggested... There is a lot of information on this site to start to get an understanding of what's happening & familiarise you with terminology (still learning).... Take care of you ML

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Thanks Gemma & Maggielee. Managed to get a doctor's appointment yesterday for tomorrow afternoon. I've calmed down a lot but still a bit shaken. xx

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Totally agree with gemma and maggielee. I am on a totally different time zone:-) I also learnt diagnosis will follow. Treat the symptoms you have now first. I first notice something wrong with me when I moved to another country. I was always getting really bad colds and flu (painful ones that I never experienced back home) then I got a very bad pain the top of my leg, treated as muscle pain. A few months later the pain cane back in the same leg but this time the lower part of my leg. By this time the doctor overseas have guess I had everything under the sun. Also had high liver reading. A month after seeing the doctors every week/ and four months after the first pain they said I had RA. At this point I took the first flight home. GP referee me for RA after more test. The pain never stopped and even though I was referee. I was very persistent in seeing the GP because I was in a lot of pain. They then referee me to the DVT clinic before I have been on a long haul flight. I was confirmed with DVT. Still in pain whiles waiting for the RA referral. I was in the GP, a&e every other day, I was even call the RA department everyday to see if they had any cancelation. I did not care if I had RA or if the pain I was having is RA related. Anyway the point is 8months later not only I have SLE but also anticoagulant (blood clots issues) and is treated by different team. Even though I have a super RA doctor who help me follow up with other departments. Sorry way off the point lololoooo. I think my point was just treat the current issues first regardless if you have diagnosis or not. Unfortunately, I learnt all of this from my mum's experience. Not only she almost die, but not she lose all her limps. Started as RA, chest infection (breathless). Don't under estimate your symptoms.

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lupus is one a few conective tissue diseases and lupus seems to be one of the most common ones so i would not be surprised if withing the lupus clinic they saw a variety of patients with autoimmune diseases. that might explain the name of your clinic. I appreciate your stress about it though. I was terrified when i realised something was up and could be lupus. turns out i didnt or not yet, but things are coming up all the time and the key thing is to be under the tight team. it's a good thing you are under the lupus clinic if you have something of this sort. and as above, make sure you also gp and get the treatment for your current problems. lupus does not aleays cause all your issues despite sometimes looking like it does!

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A good place to start might be to ring the hospital and request to speak to the secretary to the doctor you saw originally or who is listed on your appointment letter.

It’s very unusual to state a date and time and not say where you will be seen.

I wouldn’t read too much into which clinic it is, it might be the doctor /hospital trying to see you in a reasonable time scale and only have a slot in that clinic available. It won’t be a different team, it’ll be the one you’re under.

It’s unusual to be diagnosed with any of the rheumatology conditions without s barrage of tests and many of them show features of more than one, making a diagnosis difficult.

The person you spoke to was correct not to discuss a diagnosis over the phone, and if they were clerical would not have had access to the contents of your medical records.

Secretaries are usually really helpful.

Good luck.

Oh, if you are having breathing difficulties, you should speak advice from your GP

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So I went to the GP which didn't really help since she said the results were too specialist for her to understand. She said a lot of "numbers" were normal but didn't know the significance of the raised numbers. I did get a chest x-ray referral due to my breathlessness. I asked her to print the hospital letter but she talked her way out of it!

Someone eventually called me from the hospital but this was only after I left a message saying I would complain. That person said the diagnosis is SLE lupus which isn't fully developed yet (or something like that), but I feel completely different than I did when I had those blood tests over a month ago so I suppose I'll have to wait until the October appointment. Trying my best not to get stressed but I have so much going on at the moment I'm finding it difficult to say the least!

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