Still no diagnosis - am I just slowly going on brain melt? - Lupus Message Board

Sun_Shine · 09-06-2005, 05:08 PM

Hi - I'm new to this healthboard and hope that people can take a look help me see this clearly.... I just had my 4th visit with my Rheumatoligist Dr and again no clear diganosis! I'm so frustrated and I feel like I'm just going insane. For the past 5 years I've been getting worse and worse. I'm so tired - I sleep 10+ hours a night and I'm still tired, my body feels like it's 20 years older than it is most days (and breaking down). All over the body muscle aches/joint aches, skin rash/hives, VERY sun sensitive, dizzy/light headed, hair loss, extreme bruising, off & on swollen/sore lymph nodes (10+ years on this). I saw a bunch of doctors years ago and no one knew what it was - I swear I was on anti-botics for almost 5 years straight & it did not help.... I gave up & stop seeking help from doctors. Just lived with the pain. My primary doctor a year ago thought lupus during my annual examination but, then when I didn't have the T zone rash on my face he thought it couldn't be lupus after all & that I must just be over-stressed, over-tired.
After many months of recently going on brain melt - I could no longer think well or string sentences together - my work was suffering as not only was I yawning from extreme fatigue all day but, I began to make extremely stupid mistakes - suddenly I couldn't even follow a convo in a work meeting & had trouble remembering things from moments before. I could barely walk after sitting in a chair for an extended period.
After things kept getting worse this year I thought maybe it was time to seek out doctors again. I saw a Immunologist who was not helpful & then recently the Rheumatologist.
So 4 appointments and a zillion tests only again to find all my tests are negative - except for the ANA(?). (Also negative results for anemia, thyroid, cancer etc.). I just came home and cried and cried. I feel as if I should just give up on every getting well or finding out why. I've tried so hard to stay positive but, I'm getting worse. Any advice?

VeeJ · 09-06-2005, 06:19 PM

Dear Sun_Shine, Welcome. Based on my own experience, I'll speak to rashes. I know there are others here who will want to chip in soon. My suburban doctors also looked for the malar (butterfly) rash associated with SLE. But I never had one, plus my ANA was negative. Yet I still ended up being diagnosed with a form of lupus. Here's how.

My rashes were on my upper arms, with some on torso & back, and were non-scarring & nondepigmenting. For 4 yrs., the lesions looked like huge mosquito bites or small hives (but barely itched). Then for 4 more years, those same welts would expand into large circles. When this started happening, I felt even worse: terrific joint pain, fevers, fatigue, etc.

Disgusted, I took myself to a big-city rheumie. He thought I had a lupus "subset" called SCLE = subacute cutaneous lupus erythematosus, plus probably some vasculitis, and maybe antiphospholipid syndrome. He did his own tests & sent me to a dermatopathologist (a dermie who does his own labwork) for one last biopsy.

BINGO. I had the SCLE subset, which is viewed as the "intermediate lupus", falling between discoid lupus (DLE) and systemic lupus (SLE). I finally turned positive for anti-Ro autoantibody, but my ANA never turned positive. I was told that in the SCLE subset of lupus, ANA is positive only about 70% of the time. SCLE symptoms can extend through the entire SLE range, including major organ involvement; but SCLE patients, it's believed, statistically do not have the "worst" lupus problems as often (i.e., CNS & kidney). Many with SCLE remain fairly mild, in fact. I've been on Plaquenil for 5 yrs.

Also, I was told that rashes can be biopsied and found to be lupus-specific. BUT, unfortunately, biopsy results don't distinguish amongst SLE, SCLE, DLE, etc. lupus. If you go to a dermie, make sure he/she is someone skilled in autoimmunes (vs. someone heavily into cosmetic procedures).

I hope this gets you started! Would love to hear more about your rashes, by the way. Anyway, I hope you stick with us here, as the people are a very caring bunch & have seen all manner of things (alas). Best wishes, from Vee

Glojer · 09-06-2005, 07:44 PM

Sun_shine, welcome to the boards. Many here know how frustrated you are with the medical profession. You may have some overlap symptoms, many who have lupus also have an overlap disease called fibromyalgia. Check the fibro board it may have some good info also for you.

I have had positive ANA counts and positive antiphospholipid antibodies. My Dna ds and ss also tested positive for high titers for SLE and yet I don't have a diagnosis of lupus. Yes, I have the joint pain and fatigue and rashes and sun sensitive but it is so difficult to get the diagnosis. I have determined to first get treatment for my symptoms and as I feel better then work on the diagnosis.

Please don't give up, see another rheumatologist and another if you have to but don't stop trying. You are the only one who cares enough about your health to get the right treatment.

Sun_Shine · 09-07-2005, 01:34 PM

Thank you so much for the encouraging words and support - it means the world to me & was just what I need. It is such a huge relief to know you are not alone. Thank you thank you. Today's a new day and I'm exhausted from the stress of yesterday but, optimistic on trying again for a new Rheum Dr. - after this post I'm going to make an appointment for one that's close to where I leave. Your so right on the symtoms hitting both Fibroy & Lupus. I'm doing a lot of research on both to try to see what I can do on my own so any suggestions are appreciated! (Like what kind of exercise can I do? Should I do? Would it make me feel better? I'm tough & can work through the pain if it's what I need to do to get better).

As far as the rash(es) are concerned I've got a couple of things that occur. One is if I'm in severe pain or stress/diress my entire body will break into hives - giant red blotches all over - I'll get extremely hot to the point of wanting to throw up - these can last from 10 minutes to hours. The other thing that I have all the time is spots that look like freckles of blood all over on my chest & stomach. They too get much worse under stress IE I'll get many more. My jobs is extremely stressful & requires 60-70 hours a week so as you can imagine the rashes occur too frequently for me to like. I've had rashes on my face for months to a year at a time that looked like I'd drank red kool-aid and it had stained my skin. (Dry & very senstive patches that were not psorisas (sp?)). They puzzled the dermatolgist who thought I had allergies to something but, after ruling everything out one by one - and many months later - it it got better with anti-bacteria medicine & two different topical perscriptions. (It was a very difficult & embarassing time though since my appearance outwardly where people could see was anything but, "normal").

PS: I slept 12 hours last night & could barely wake up this morning - I was so tired. But what a joyful suprise to see your posts!

VeeJ · 09-07-2005, 03:35 PM

Dear Sun_Shine, Good luck on the appt. with new rheumie. Ask for a copy of the tests, too---can't hurt to prove to yourself that you are being tested for the whole slew of things (ANA, plus all the specific autoantibodies & complements, etc., meaning not just ANA as the "first cut". When drs. do just ANA then quit, important findings can be utterly stifled.

Drop a line when you can & let us know how you are faring, OK? Hang in there, Vee