The note from my gp says normal but I'm never sure if it's high normal or low normal or just plain middle of the road normal. I just want to figure out what's wrong with me so I can hopefully head in right direction to feeling better.
Dear JeanneO, Just some thoughts... probably not all that profound...
(1) Did the printout show a reference range for each of these, meaning what's considered normal?
(2) Some old labs of mine of which I kept copies showed decimal values for SSA & SSB (e.g., "N.N"). Are you sure these whole numbers don't refer to a footnote? (Sometimes mine showed footnotes, not real numbers.)
FYI, I finally turned positive for SSA but never saw the lab printout to see how that positive was displayed. Would have been a different lab anyway than the umpteen labs I had over the years I kept them anyway.
(Sorry, but none of my very old labs show either Sm or RNP.)
(3) From what you wrote, it looks like you are still seeking answers. Have you only worked with your GP (as opposed to specialists)? What type of symptoms have you had? I only ask that because sometimes a very specific symptom can be chased down by a specialist---like a rash, by a dermie.
I learned this the hard way, by being resolutely ANA-negative for all the years I looked for answers. It turned out that I had lupus, but it was the subacute cutaneous (SCLE) subset, not systemic lupus (SLE). My rashes were always on my torso & arms; they didn't scar and didn't depigment. I felt like trash, hurt, lost weight, lost hair, had GI & urinary problems, became anemic, etc. All my local drs. (GP, rheumies, dermies, etc.) were looking for ANA to be positive, but in the SCLE subset it's positive only 2/3 of the time (or so).
For what all this is worth...! I hope you post further, as others here may have strong thoughts depending on what ypu've experienced so far. Meanwhile, best wishes, from Vee
Hi Vee...thanks for the response I'll go down the list (as best I can)
(1) No, it doesn't reference any ranges...in fact my 1st go around all I got was a note from the GP that said everything was normal.
(2) I'm really not sure about any of the readings...I am so new to all this that I don't even know what to ask. I've called my gyn to ask for my blood test results for the last 2 years, but I'm sure they tested for the usual things....cholesterol...thyroid...white blood count etc.
(3) I am working with my GP although I've been under the care of a dermatologist for a long time - a fingernail specialist in Seattle. Many years ago (I was 18) I'm now 47, I was diagnosed with lichen planus...I had it on my skin...very itchy lesions, but it went into remission (?) and came back off and on for the next 10 to 15 years. They knew VERY little about back then, said it was caused by stress. About 15 yrs ago I developed it on my fingernails which made them peel off the nail bed so I found my current derm who said that it was an autoimmune disorder, it went into remission. Shortly after that I had my 1st bout of alopecia aereata. Was told it was caused by stress. But just had another bout of alopecia last summer and my derm said autoimmune disorder and got hit with the LP as well, this time on my fingernails, toenails and oral. I feel like a pincushion....I've been injected with steriod so many times, nails, scalp...ouch!!! So I started to research.
In the meantime I just had an MRI for neck issues and a lesion showed up on my thyroid so while having it all checked out I asked my GP to test my blood as I'm concerned about the autoimmune issues. I also had pancreatitis in 2003 and suffered terribly with hives in 2004.
It just seems like I'm chasing to try to find out what is wrong with me. I just feel like there must be an underlying issue and if I can find it, then maybe I can begin to feel better. I feel like I'm a hypochondriac...always something wrong with me.
I must have been asleep at the switch yesterday. Here are some leads I should have given you: first, the STICKY POSTS at the top of the thread list. One is on Lupus test results. The others contain the ACR criteria for lupus; a list of "alternative criteria"; and a list of symptoms/criteria for antiphospholipid syndrome, a blood clotting disorder also seen in some lupus patients.
Two other very good sources would be hardcovers found in most libraries & bookstores: one by Dr. Daniel Wallace, and several by Dr. Robert Lahita. These men are two of the top U.S. rheumatologists. Perhaps scanning these materials can help you form some very precise questions for your GP, dermie, endocrinologist [was there one for your thyroid issues?], etc.
As far as lichen planus goes, I don't know its correlation to lupus (if any), let alone to other autoimmune disorders. Maybe you could do some extra searching on that, also looking for the so-called "differential diagnoses" to LP (things that might look like it but arent). Have you asked your dermie pointblank, especially now that other problems are occurring, in what broader disorders it also occurs? (And if I find anything interesting, I'll post same.) Of course the caveat on all skin problems is, Did the dr. Dx it correctly? I don't say that to be mean-spirited, rather that skin problems can be very tough. e.g., I had years of annular lesions that were called all sorts of things by about 5 dermies; turns out they were absolutely classic SCLE annular lesions, all along.
Also, see the tab labelled RESOURCES above? This Board has links straight to mainstream info on a whole raft of diseases & conditions.
As far as hypochondria goes... I think a *rational person* would start to think something was fundamentally wrong if seemingly unrelated things kept going wrong over many years. I certainly was in that boat, too. I was Dx'ed at age 47-1/2 after a lifetime of episodic problems. I was at my wits end, as none of my drs. even BREATHED what they were looking for. It was the hospital radiologist who let the cat out of the bag, when he was doing a kidney function test on me. And I'm STILL very angry that no one levelled with me, as my problems did great harm to my childbearing years, career, and marriage. I consider myself a very logical person who could have easily handled suspicion---not good at all, though, with snarkniness or paternalism.
Last, have you ever seen a rheumatologist?
Hang in there! We'll all watch for more posts from you, OK? Bye for now, from Vee
Hi Vee...thanks for the info on the resources tab...so much info out there. Iíve been meaning to post a reply for days now but with the holidays and a mass on the back of my neck removed and biopsied yesterdayÖbenignÖ.yay!! My days have been so hectic.
I had a biopsy done on my skin lesions when I was in my 20's and then had a biopsy on my fingernails in my 30's, both came back lichen planus. I haven't had one done in my mouth but do think that I will. My mouth isn't so bad but my fingernails...or lack thereof are quite awful. I've pretty much lost most of my nails and even though it isn't life threatening it sure is uncomfortable. You don't realize how much your nails protect the soft nailed. And it's really ugly...but it could be worse. That's kind of the problem, it hasnít been bad enough for me to follow other avenues until the last couple of years when the various other issues have cropped up that Iíve begun to think that maybe thereís more to this than just ugly fingernails and bald spots on my head.
I havenít been to a rheumatologist yet, I called to make an appointment but they asked if I had a referral (which I donít need for insurance purposes) so I thought Iíd go to my gp 1st, also I want him to have a record of all my issues anyway. I really like my GP, Iíve been with him for about 8 years now. So after I get my results with the ranges I may have to head that direction depending on what they are.
I still have to follow up on the thyroid issue, a small solid mass that I've had an ultrasound done but haven't heard official word back from my doc. I guess it's onward and upward.