Frustrated

[Burns9624]

I am new on here. Only diagnosis is autoimmune condition. By the time I get appts., my flare-ups go away. This has been going on for 4 years, now. In the last week, I had excruciating, throbbing pain in my right toe for about 24 hours. Then came numbness in my right hand, which comes and goes when I carry anything in that hand. The last 3 days I have had the most itch bumps ever around both elbows and knees. I have had these before. Sometimes I wept up, but these were feverish, empty bumps. I went to Dr. and got steroid shot. My whole pinky finger turned purple while I was in the office. They want me to go back to Rheumatologist, but he stays so backed up, I maight see him in a month. They would not do labs because they were closing for the day and want me to go back in the morning. I have dental appt. I expect the steroid shot will prevent labs from showing anything. I am not wanting to have Lupus, I just want a specific diagnosis so that I will know what I should and should not do, eat, take, or whatever. Any help appreciated.

[Chanpreet_Walia LUPUS UK]

Hi Burns9624,

Welcome to the LUPUS UK HealthUnlocked Community. I am sorry to hear that you are having a tough time getting a diagnosis.

Have you ever been tested for lupus? To find out the specific tests and criteria that need to be met in order to make a diagnosis of lupus, click here lupusuk.org.uk/getting-diag...

Having a blood test during a flare may provide more reliable results as this is when disease activity in higher in the body.

Have you been taking photos of your symptoms? Taking photos of your symptoms before they may ‘go away’ can help your rheumatologist better understand your situation. Before attending your next appointment, you may like to read our blog article on ‘getting the most from medical appointments’ here: lupusuk.org.uk/getting-the-...

You can try ringing the rheumatologist’s secretary regularly to see if you can fill any cancellations they may have, that way you may get an earlier appointment.

Below, I have included some information links which I hope you find useful:

Skin: lupusuk.org.uk/wp-content/u...

Itchy rashes: lupusuk.org.uk/coping-with-...

Pain management: lupusuk.org.uk/request-info...

Free information pack: lupusuk.org.uk/request-info...

Please keep us updated, wishing you all the best.

[Burns9624 in reply to Chanpreet_Walia]

Thanks so much. My labs showed positive once with general practitioner. The Rheumatologist he sent me to says I don’t have it and is very degrading. He tells me of all his patients who have it and how much worse they are. My Dr. Sent me to a different Rheumatologist 2 hours away. I liked him, but by the time I get in, my symptoms have usually subsided and blood work shows negative. I have had many symptoms in the past two weeks. The heat had taken a terrible toll on me. Soonest appt. is 12 days away. Thanks for your help and suggestions.