[TamaBama]

Hi everybody! You all sound so nice and I thought maybe I could ask for some help from you...

After six years diagnosis still eludes me. I'm so close to many of the different AI diseases but never seem to fit neatly in a package. My chief complaint is symetrical PAIN in my legs. Some days are better than others but there's not a day goes by w/o taking pain meds. I have definate fatigue and sometimes mouth ulcers and small body rashes. I get a discoloration on my skin above my upper lip everytime I'm in the sun, even if for only a couple of minutes. I do NOT get the butterfly rash though and the main problem for diagnosis is that I don't get the swelling along w/ the pain in my knee and ankle joints either. Do all people with Lupus have the inflamation?? ( I also do NOT have the tender points or sleeping problems that would give me a Fibromyalsia diagnosis.)

Anyways, if this sounds like Lupus or anything else you know of, can you please help! I'm starting to go crazy and want my life back!!

Thanks guys!!! ((*_*))

 

[Katharine]

Hello there and welcome here

It does definitely sound like you have something going on.

Have you actually seen a rheumatologist? Who is it that you are you seeing that excludes diagnosis? Have you been started on any treatment? Have you ever had the ana blood test done (good as a screening test for AI diseases in general)?

Sorry for so many questions but it does help to guide you if we know a little more.

Your symptoms are fairly typical for lupus or some other AI diseases and I am surprised if the lack of swelling is the only criteria preventing diagnosis (hence all those questions). I don't have any visible swelling in any of my joints. I do have pain and inflammation but it isn't visible. My knees and ankles are the least affected in my case.

I do get the malar rash but it is only very visible occasionally, the rest of the time it is more a kind of "healthy glow" :lol:

The thing is that lupus can vary greatly from one person to another so it is terribly difficult to talk of typical symptoms.

Auto-immune diseases are particularly complex and it can take some time for diagnosis. There are many criteria and it takes an experienced doc to put it all together.

At the top of the "not yet diagnosed" section you will find lists of criteria and alternative criteria for diagnosis. It may help you to put things together and see if it fits for you.

hope that helps a little,
Katharine

 

[Maia]

Welcome - I'm sorry to hear after 6 long years there is still no diagnosis or helpful treatment for you! Only about 25-33% of lupus patients get the butterfly rash; many of us here do NOT have inflammation as evidenced by the blood tests (SED rate or CRP). Many do not have visibly evident joint swelling or inflammation. In fact, with lupus it is common to not have red, swollen joints (i.e. arthralgia is more common than arthritis with lupus patients). Good rheumatologists will know this...

I would imagine that you do not have much for positive blood work - and that is why no one has diagnosed you with anything? Has anyone tried treatment for you at all? I'm sure you've probably done the second opinion , or possibly even a third opinion by now. You may want to check out the "Find a Doctor" forum down below to see if there are any doctor recommendations or lupus specialists in your area if you are really concerned about lupus being a possibility.

In the meantime, I would strongly recommend you obtain copies of your past blood tests and doctor's visit notes. Learn about blood testing and see if, over the years, anything has been overlooked. We can help you with them a little bit here as well

Best wishes - I hope you get somewhere soon.

 

[LolaLola]

Hello. Are you in the UK? If so St. Thomas's in London is a good place to be referred to. They would definitely listen.
x Lola

 

[BigSis]

Hi There,
You certainly need to be seen by somebody who knows about lupus.
When flaring badly my joint pain is bad (shoulders, elbows wrists and feet)but the only swelling i have is in my fingers. Swelling is not necessary for diagnosis.
Good luck and let us know how you get on