Hi there, I too am new to this site, and struggling to get a diagnosis.

[suepee]

Does anyone know a good LUPUS specialist in the merseyside area? I feel as if my GP does not take me seriously and I question my own sanity at times!! I don't know what tests I should be having and I feel as if I can relate to so many of the symptoms on here, but struggle to get it across to my GP, mainy because the symtoms are so diverse, and sometimes feel worse than others, I don't know which one to start with.

[Hidden]

Communication with your doctor is imperative. Autoimmune disorders/diseases are complex. Frustrating for the patients as well as the doctors.

The link below has an article 'How to prepare for a doctor's appointment' which can be very helpful - especially the section 'Anticipate what the doctor needs to know'.

lupus.org/webmodules/webart...

Make it simple - inform your GP you think you might have lupus and hand them your self test answers (questions below). Then your GP will be forced into asking for further detail and proceed forward with appropriate tests for your particular situation / set of symptoms. It might not be lupus. Best to find out what's what.

Self Test (from Lupus Foundation of America)

Brain and Nervous System

Have you had a seizure or convulsion?

Have you had unexplained confusion that lasted more than an hour?

Have you had unexplained fever higher than 100º F/38º C for more than a few days that was not due to infection?

Eyes, Nose, and Mouth

Have you had sores in your mouth or nose that lasted more than five days, or sores on your skin that would not heal?

Have you developed irritation or dryness in your eyes or mouth for more than a few weeks?

Heart or Lungs

Have you felt chest pain while taking deep breaths?

Stomach and Intestines

Have you had unexplained weight loss or abdominal pain that is worse when you breathe?

Kidneys

Have you been told you have protein in your urine?

Have you had swelling in your legs and ankles on both sides at the same time?

Muscles and Joints

Have you had stiff, tender, and swollen joints that feel worse in the morning?

Have you ever had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?

Blood and Circulatory System

Have you been told you have anemia, low white cell count, or low platelet count?

Have your fingers and/or toes ever become pale or red or blue, or felt numb or painful?

Have you had a stroke or heart attack?

Have you ever had blood clotting problems or a miscarriage?

Skin

Has your skin broken out after being in the sun, but it’s not a sunburn?

Have you had redness or rash across your nose and cheeks in the shape of a butterfly?

Have you had sudden, unexplained hair loss?

If you have had any symptoms like these, especially if you have had several, talk to your doctor about lupus. Early diagnosis and proper medical care are the best ways to manage lupus.

I hope this was helpful to you. Take care of yourself. Be well.

[suepee in reply to Hidden]

Thank you so much for this answer, it is really healpful . I know I need to list things point by point and try to stay concise! I will check out the links you've mentioned as well. Thanks again xx

[Hidden in reply to suepee]

It is a complex frustrating issue. Emotions are bound to bubble up. Acknowledging that a doctor's appointment is a set moment in time use that time as wisely as is possible to gain that best care available. Prepare for your appointment in advance.

Only you as the patient (or a patient advocate such as a trusted loved one) has the power to reveal what's what so that the doctor can proceed forward to gain you the best of care available for your specific combination of issues. Help your doctor help you.

Please take care. Best of luck at your next appointment.

[mstr]

Hi Nouska,

Thanks for the helpful website address. I sometimes feel I have come out of appointments and I have missed points out or not really described the pain as well as I should have. Thank you I will use this information for my next appointment on the 5th July. M

[Hidden in reply to mstr]

You might want to check out:

lupus.webmd.com

It is a good site for information - check lists et al. Easy to navigate. Developed and maintained by MDs.

Being as informed as is possible can ease the confusion upset frustration that lupus can bring.

If you have brain fog/confusion then lists are best. Make a copy of your list for your doctor and hand it over then discuss it point by point together. It makes for an efficient highly productive appointment for both doctor and patient.

Take care. Be well.

[helentad]

Hi, a doctor in Liverpool at the royal Based in Aintree Is Prof Moots. he is the best outside of St Thomas in London or so I am told.

Best wishes Helen

[Hidden]

Further Helpful Information for Patients and Doctors

The biggest bother with Lupus is it is the great mimicker in addition there are different forms of Lupus itself. All must be identified.

Other conditions with symptoms similar to Lupus exist. This confuses already over worked doctors and overwhelmed patients. Best to peel back the onion layers to find your specific issues for as precise a diagnosis as is possible.

One thing I've noticed recently is many doctors jump the gun with the lupus label, order a Rx, and halt the diagnosis process, which is dangerous as many patients are not being treated for their specific array of symptoms. A blanket medication routine is given that merely cloaks not heals nor treats - and sometimes lessens quality of life.

Testing is a massive bother but it is only through testing that you can receive the highest quality of life, best care/treatment, for your specific requirements.

Several conditions may be confused with lupus (systemic lupus erythematosus, or SLE). They share some but not all of the symptoms of lupus. For example, rheumatoid arthritis begins with joint pain and swelling, and fibromyalgia begins with fatigue and joint pain. But as the condition continues, people with lupus develop skin rashes or symptoms in other organs, such as the heart, lungs, or kidneys, and will test positive for antibodies produced by the immune system that help to identify lupus.

Conditions that may have symptoms similar to lupus include:

Arthritis (joint pain and restriction of movement), such as rheumatoid arthritis.

Fibromyalgia, a disease of the muscles and joints that causes pain and stiffness.

Glomerulonephritis, inflammation of the kidneys.

Scleroderma, a disease of the body's connective tissue.

Sjögren's syndrome, a condition that causes dry mouth and dry eyes, and is often associated with rheumatoid arthritis.

Chronic fatigue syndrome, a condition of severe, long-term fatigue.

Vasculitis, inflammation of the blood vessels.

I hope this further detail helps others on the cusp of diagnosis to gain the most precise diagnosis possible.

Please take care. Be well.

[j7blupus]

Professor Moots and his team at Aintree

[suepee]

thanks, his name has cropped up a couple of times. I will certainly mention to my GP. I just need to get a bit more assertive I think!!!