I feel like I’m ringing the doctor’s with a new problem every week recently and I feel as though everyone just wants me out as quick as possible with pills to cure me. I’ve had a supposed kidney infection, supposed carpel tunnel, supposed IBS, recurrent water infections and recurrent coldsores (can’t remember the last time I didn’t have about 4 at once). I’m also constantly exhausted, feeling sick and headachy and I have bald patches on my head. I don’t know how to approach a doctor properly where they genuinely listen and don’t try and get you off the phone with another prescription. Has anyone had a similar experience who can advise please?
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Hjw1995
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See a rheumatologist. They can help by ordering an ANA test and if positive they will do a full panel of autoimmune antibodies , that's the best starting point to figure out if you have one of the autoimmune conditions.
It does sound like there’s an underlying issue with your immune system.
I think you should try to book an appointment in advance. Can you get a double appointment in your GP surgery?
Go armed with the American College of Rheumatology diagnosis criteria and some notes about your symptoms. Has your doctor seen your bald patch?
Is there a GP that is more helpful than the others?
Can I ask where you live? Are you UK? Only we have members here from all over the world, I want to check before I answer, as I only know the system here.
If you are in England, there are 10 LUPUS UK Centres of Excellence and you can request to be referred to a rheumatologist in one of those, if that is possible for you to travel to.
I’ll also find some information on the diagnosis process.
Unfortunately the average lupus diagnosis takes 6.4 years (from memory) so this scenario isn’t unusual.
The GP needs to stop being pre-occupied with each individual issue and take a step back to look at the bigger picture.
Hi Wendy, That’s all very helpful! I live in the UK, in Newcastle. Due to covid all appointments have been on the phone so the doctors haven’t seen any symptoms. I can’t believe that’s how long the diagnosis time is!
OK. Take a look at the LUPUS UK website. There’s so much info on there. There’s also a search facility, so a good source of reliable information.
If you haven’t seen a doctor, I’d advise keeping a diary of symptoms and how you feel each day, also take lots of photos of visible symptoms - cold sores, skin rashes, malar rash, hair loss, etc. GPs can’t argue with a photo.
Your symptoms sound like me in the year leading to diagnosis.
If your GP argues against a rheumatology referral in the first instance, ask for the relevant blood tests and say, let’s see what my bloods say and we’ll take it from there?
Hope some of this is helpful.
You’re in the right place to educate yourself about your health and get taken seriously by your doctors. It’s an amazing group offering support and wide ranging experience of all these lupus issues. Use us. Ask away. There’s also a search facility here. So you can look up certain symptoms.
The GMC has warned GPs that they have a duty to offer face to face appointments under their contracts. If they refuse your request for a face to face appointment they are breaching their contract. The GMC has said it will consider financial penalties if the GP refuses face to face appointments. So if your GP surgery refuses your request to be seen in person, you can complain to the practice manager or the GMC.
Welcome to the LUPUS UK HealthUnlocked community forum. We offer a free information pack which you may find useful to download or request at lupusuk.org.uk/request-info....
Oral/nasal ulcers, extreme fatigue, headaches and hair-loss are common symptoms associated with lupus. There are specific tests and criteria that need to be met when making a diagnosis of lupus, to learn about them read our blog article at lupusuk.org.uk/getting-diag.... Some patients have found it helpful sending our booklet on diagnosis to their GP when explaining their symptoms and asking for tests - lupusuk.org.uk/wp-content/u.... If you need a physical copy, please email headoffice@lupusuk.org.uk
We published a blog article on how to get the most from your medical appointments which you may find helpful to read at lupusuk.org.uk/getting-the-...
We offer a range of publications about symptoms and conditions associated with lupus which you may find useful - lupusuk.org.uk/publications/
Hello, I had the same problem at my Drs- told there's quite a few symptoms you've told me about today etc.Then about 5 wks ago the drs moved to E consultation, so I had to go online. This allowed me to list my symptoms, attach photographs, list previous illnesses as well as current ones.
The top Dr phoned me at 8pn that night, referred me and I saw rheumatology on Monday.
If you have this system as your drs I really do recommend it as they are able to see the everything and put the pieces together.
It sounds like you are really struggling. Unfortunately, the diagnosis of lupus can be long and complicated.
There are specific symptoms and non-specific symptoms. The two symptoms that could be specific to lupus are the « cold sores » and hair loss. These symptoms are alarming to doctors when they have certain features. I have canker sores, which are not related to my autoimmune disease. Has your doctor seen your sores? Take photos. Others may be able to tell about lupus ulcers.
This is the same for hair loss. Hair loss is a common condition - had that too but not autoimmune - and they can tell if it is typical of lupus. Again, take photos. Your best bet right now may be to get a video session with a dermatologist. If those two symptoms look consistent with lupus, combined with your fatigue and carpal tunnel, you might get urgent referral to rheumatology.
Don’t feel at all bad about ringing the doctor every week. That just tells them there is a pattern and to watch out because a patient is presenting with new symptoms frequently. I called myself a patient on the « symptom of the month club » before diagnosis.
My guess is it is too early to get a rheumatology referral unless your ANA is positive. With the pandemic they try to minimize in patient visits too. Your GP can run all the blood tests. He probably has already done a CBC and ESR, right? Did he mention any abnormalities?
Ask about your kidney infection. There may have been nothing to make him think it wasn’t an infection. But you want that information.
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