Lupus diagnosing

[Kristina14]

Hi guys looking for advice docs are thinking I may have lupus. I have fatigue, uv sensitivity, skin rashes, mouth ulcers, headaches etc I was wondering how u guys got a definite diagnosis and what can the docs do to help relieve the symptoms. Any advice would be more than appreciated

[Lisa6161]

Hi Kristina, well if your dr thinks Lupus, at least they are looking in the right area. Every lupus patient presents different symptoms. The ones you describe, could be indicative, but Drs will also test you for other illnesses, to rule out. Blood tests and sometimes, skin biopsies, can diagnose lupus. Any rheumatologist you see, must be 'up' on lupus. This is an autoimmune condition, for which there is currently no cure. However, there are lots of meds available to help.

Immunosuppressive drugs, and inflammatory ones too. Don't get too negative about this, and for lots of sufferers, it rarely affects their lives. Lady Gaga has it!!!

Whatever the outcome, I'm hoping you get the right care from the right Dr. It really is important.

Come back and tell us the outcome. Best of luck x

[Kristina14 in reply to Lisa6161]

Aww tha k u so much for ur reply I will defo keep u posted

[catno1]

Hi,

Speak with your GP is best. Lupus diagnosis can take years due to it's rather erratic manner initially. Most people who have had Lupus SLE diagnosed may have had organ involvement, mental health issues and many other troubles. As the disease is systemic it can mimic many other diseases. I would prefer to think your symptoms were not a sign so please seek advice from your GP. A quick history for you of my diagnosis -

seizures/panic attacks, complete mental breakdown, liver failure, severe DVT, a long history of arthritic problems since childhood as well as mouth ulcers. Three months of blood testing and an appointment with a senior rheumatologist who looked my history over and tests and I was diagnosed with Lupus (SLE) fourteen years ago.

Good luck and please seek advice. Some have had an easier time and others have had troubles constantly. Lupus has been a violent disabling condition to me. Have a search on the site with regard to your symptoms.

I hope you get some support from your GP. Try not to worry.

Best Wishes,x

[Kristina14 in reply to catno1]

Aww thanks for ur reply. I have always had a horrendous immune system but just never got to the bottom of it but this last 2 years has been hellish. I have many issues with anxiety and depression as well as fertility problems and many more things

[catno1 in reply to Kristina14]

Nice to hear back from you. Sorry to hear your problems sincerely. I'd not want anyone to be diagnosed with SLE but do ask advice please. The whole world of diagnosis and getting anyone to listen is something I could rant & rave about especially after some awful things that happened last year after stopping an osteoporosis medication. What with the resulting spinal fractures and the results of an MRI proving severe osteoarthritis in my lower spine my patience with the medical system is lacking. Other similar problems took them years to listen to even though I'd asked advice for over a decade of my Consultant and now finding that they're all older problems than even the Lupus! I feel like 100yrs at the moment not 52, not due to poor me I swear to you but just years of no one listening.

Don't give up, seek help if you feel you need it please. Most of all take care of yourself and try and stay strong, not easy I know but understood by many of us here.

All the best to you,xx

[whisperit]

Hello Kristina14

As others have said, diagnosis can be difficult and may take a long time. Bear in mind there are numerous related conditions - such as Undifferentiated Connective Tissue Disease and Sjogrens' Syndrome that will need to be considered too.

If you aren't happy with the answers you are getting from your doctors, please don't give up. Keep in touch here and there is sure to be someone (and probably several people) who will have trod that road before and who can suggest what to do next.

For now, the LUK leaflets here - which include some on diagnosis - may be helpful lupusuk.org.uk/publications/

X

[Kristina14 in reply to whisperit]

Thank u for taking the time to reply I really appreciate it. I will do a bit research into the other conditions u said. Thanks again