Could It be Lupus?? - Lupus Message Board

Malo1a12 · 01-10-2007, 01:47 PM

Hello everyone-
I have been to many doctors trying to figure out what could be wrong with me. I have been experiencing very painful nodules on my fingers and toes for almost 2 years now. They never itch or leave scars. I went to a dermatologist and they performed biopsies which revealed I may have lupus. I was sent to do blood work (sorry but im not sure exactly what was done) which came back negative for lupus. The dermies best guess was pernio also known as chilblains which develop in cold and damp enviroments. This seemed odd to me as my first severe outbreak of these nodules was in the summer while at the beach. I also have excessive protien found in my urine which doctors have dismissed after severel tests and told me that this just happenes to some people. I have been getting frequent urinary tract infections and for about 3 months I have been experiencing chest pains a couple times a week that cause severe pain when I breath in. I also experience Raynaulds phenomenon but I have hyperhidrosis which may cause this. Last month I was also in the hospital for a deathly reaction to sulpha and while doing research I found this is common in people with lupus. I am being sent to my 5th doctor and I am pessimistic of a diagnosis and am hoping you all can help. I know the blood tests came back negative but could my symptoms be related to Lupus or just a coincidence? Thank you so much for the help!!

VeeJ · 01-10-2007, 03:39 PM

Malo, I went thru many doctors trying to find out what was wrong with me. Had I only chosen different doctors, or known more what to look for.... (Aaargh!)

Every person with lupus is different, so what follows is only what I personally have learned.

1. I didn't realize that doctors should NOT stop testing when ANA is negative. There are multiple types of lupus, and I turned out to have a kind in which ANA can be negative as much as 30% or more of the time.

2. The "subset" of SLE I was Dx'ed with is called SCLE = subacute cutaneous lupus erythematosus. Very few of the articles & books I saw, once they told me they suspected lupus, said much about it. Most articles only speak to SLE, not to its various "subsets".

3. I never had a butterfly rash. I had annular (targetlike) nonscarring rashes on my arms & torso. My local drs. were only looking for a "butterfly" or for discoid (scarring) lesions. That was short-sighted.

4. My dermatologists stopped short, too. They did microscopic work but never went on to immunofluorescent tests. When subjected to these tests, lupus rashes behave in a very characteristic way, so they are very useful. And if you have a lupus rash, you have SOME FORM of lupus, though not necessarily full-blown SYSTEMIC lupus.

5. I'd never heard of dermatopathologists, who are dermatologists who are also pathologists, meaning they do their own labwork. And I'd seen only rheumies in the suburbs, who were not so "up" on lupus in all its guises.

Do you have copies of your previous lab results? i.e., can you tell whether you've been tested for the MANY markers often seen in lupus? (Dr. Wallace in his hardcover lists 16 or so to look for, in bloodwork alone!) Or did your drs. stop cold after doing the ANA test?

Bye for now, Vee

Malo1a12 · 01-10-2007, 05:08 PM

Thanks so much for getting back to me your information was very helpful!! This has been a VERY frustrating battle! Its nice to know im not the only one that has gone through this. I actually never got my blood test results back. My dermie works in the same building as my father and the message was just given to him that the lupus test came back negative. I was told at the clinic they were just testing for indication of an autoimmune disease if that helps to indicate a certain test. I feel pretty clueless about this whole thing regardless of my insane amount of researching. My next doctors visit I will ask for more tests to be done. My derm reffered me to a vascular doctor because he said the rash on my fingers and toes is vasculitis. Should I be seeing a different doctor? Thanks again for your help! I'm so glad I found this site!!

patience 50 · 01-10-2007, 07:22 PM

Hello Malo,

Has anyone suggested you see a Rheumatologist? They are often the best Dr.s to diagnose Lupus and some other autoimmune diseases. I hope you get some answers soon. Your symptoms certainly do sound lupus like. However, Lupus is called the great immator for a reason too. It tends to mimic many other diseases so one must be care not to make assumptions.

I too have neg. blood work often. I also have Lupus. A Rheumatologist worth his salt will take all your history and symptoms into account and then make a diagnosis. Often a diagnosis is the result of ruling out everything else. I know that sounds lame but it is because Lupus can be so difficult to pin down. Good luck to you.

May God Bless Us All
Patience 50

VeeJ · 01-10-2007, 08:51 PM

Hi, Malo, I agree with Patience that a rheumatologist is your best bet. [Hi, Patience!]

READING: Have you seen the "sticky posts" at the top of the Board? Look at the one with the ACR criteria. What you'll see, between the lines, is that there *isn't* a single test for lupus. So it's not really valid when a dr. says, "Your 'lupus test' came back negative." Another way of saying this: part of the diagnosis is through labwork, but a large part is "clinical", meaning by observation & a thorough past medical history.

Another strange thing about the ACR criteria: You do NOT have to meet them simultaneously. And if you've met one at any point, think of that one as being permanently checked off in INK.

VASCULITIS: There are multiple types: CNS (brain), mesenteric (GI system), cutaneous, etc. Cutaneous can be superficial, or it can cause more serious things like ulceration, which MUST be treated.

I know a man who had a sudden & severe bout affecting both legs, seriously compromising his skin. Finally he ended up going to a teaching hospital rheumatologist. He was treated with steroids and made a full recovery.

I've read that many lupus patients have some kind of vasculitis along the way, but I *think* you can also have vasculitis WITHOUT having lupus. But that's another reason to seek a rheumatologist, I think: so you can get BOTH concerns addressed ASAP.

I hope you can put a plan of action together & make it work. Let us know how you're doing, OK? Best wishes, Vee