Lupus?

[Dalollies]

I am new to this... Not getting much help with my primary. I had a blood test and it came back high 1:80 with a speckled pattern. I have allergies so I have been assuming my symptoms are from them. I get fluish, hot feeling ears, sore throat, hoarse, sore joints, muscle pain, hair loss and a butterfly rash. I have had this for 3 years. Does anyone have simular symptoms? Can't see a rheumatologist till January feel like I'm going crazy from all these symptoms.

[misty14]

Hi dalollies

You certainly have something wrong with your immune system and have the butterfly rash from your great photo!. Trouble is ANA is not specific enough for Lupus hence you needing to see a Rheumy who will take more specialised ones!. Dreadful your having to wait till Jan feeling so poorly. You could ring the clinic and go on their cancellation list or if you worsen you could ask your GP if he'd write asking for you to be seen sooner.

Let us know how you get on and good luck. X

[Dalollies in reply to misty14]

Thanks for the info... I am on a list but I am going to look at getting in at a town further away.

[Cas70 in reply to Dalollies]

I don't know how many other symptoms you have - there are so many we tend not to connect them or have fear of being thought a hypochondriac. I have Discoid Lupus. with Sjogrens Syndrome. Sjog is "dry body" syndrome which causes the eyes throat,mouth to dry up causing great discomfort. Also you can have aching joints and muscles and fatigue. I am just thinking you might want to get checked for this as it was whilst they checked me for Sjog they found the Discoid too. They often go hand in hand as all to with autoimmune problems. Just thought this as I read latest posts. Lots of remedies for Sjogrens to relieve discomfort and Hydroxychloroquine is used too. Good luck

[Dalollies in reply to Cas70]

Thanks for letting me know about these symptoms...everything helps. I had a laprascopic nissen surgery for my reflux 2 years ago. My last bout with the hoarseness lasted 2 weeks and I have had heartburn and bloated stomach. Just another thing to add I guess.. I will definitely ask about discold and sjogerns. It just seems like the flood gates have opened!!!! Thanks for letting me ranton.

[Cas70 in reply to Dalollies]

It helps to use this website when it really gets to you. There is always someone who will answer.

[Cas70]

I had all those symptoms and have been diagnosed (after a year!) with Discoid Lupus which is the milder (ha ha) of the two. You have found the right website - I'm afraid you have to keep fighting for appointments until you get the right medicine. Drs now are reticent to give a diagnosis so it is generalised to "immune system problems". I saw an Immunologist first who took lots of bloods and X-rays etc. You will have to be patient but keep pushing for appointments- go back to GP and ask for Immunology appointment it isn't just Rheumy docs who can diagnose and my Rheumy was useless - also ask for Dermatology appointment - it was a dermatologist who insisted on a scalp biopsy (painless) and gave the diagnosis of Discoid. If you have itching don't scratch scalp I developed bald patches and it won't always come back. There is too much reliance on Rheumatologist for diagnosis. My Dermatologist and his nurse were a God send. The drug that helped me to better health is Hydroxychloroquine. It was the Derby who said I needed it - good luck and go fight for those other opinions. Cas70

[Dalollies in reply to Cas70]

Wow!!! I didn't realize how crazy this whole immune system works... So glad I got on this site I am learning so much... Thanks so much!!!

[Cas70]

Sorry that should read Dermatologist who recommended Hydroxychloroquine. Let us know how you get on, it can be very confusing and slow, so go push -

[Kazunlocked]

Best Wishes to you. Lupus (& no doubt many others) is really a jig saw puzzle & it takes a long time generally to get appropriate help.

[shareasmile]

Unfortunately, the whole process for getting a diagnosis and starting treatment with autoimmune diseases tends to be long and drawn out--sometimes taking years. This is partly due to the difficulty in getting timely appointments with the experts and also due to our bodies taking their sweet time revealing all the signs and symptoms necessary for diagnosis. Your ANA result is above normal, but many doctors would still consider it to be basically negative. Don't hesitate to ask for this test to be redone. Mine began at negative, then went to 1:80, homogenous pattern. The latest result for me is 1:640, speckled & homogenous. My doctor and I are still sorting through all of my information to formulate an accurate diagnosis, but so far I have Connective Tissue Disease. Incidentally, I started with the diagnosis of sero-negative Rheumatoid Arthritis and when some meds didn't work, one doc tried to tell me I had Fibromyalgia (Wrong!). I have had to push hard for proper care and advise you to do likewise. Educate yourself and write everything down. It's great that you are taking pictures, too. Have all this with you when you go.

Cas is right. Try as many routes as are available to get answers. The wait is the worst!

All the best to you! I hope answers come quickly and treatment can commence!

[Ronswife]

Dalollies

Keep seeing other doctors until you get the help to feel better. Too often we are treated as test subjects and mds are afraid to commit. I have been diagnosed as PMR and I think it is but my ANA made Two before say Lupus so My Rheumatologist is observing still. I am on this forum to see how my symptoms are anything like lupus.

[Paul_Howard Partner LUPUS UK]

Hi Dalollies,

I'm sorry to hear that you have to wait so long to see the rheumatologist for further investigations. It may be worth phoning their secretary from time to time to see if there have been any cancellations and if they can fit you in earlier.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Dalollies in reply to Paul_Howard]

Thank you for responding.. I really appreciate your help!!