First, I have to admit I have been creeping this site for a couple weeks I went in a couple weeks ago for extreme fatigue, muscle/joint pain and tingling/nerve pain in my hands and both big toes. The labwork showed a low ferritin of 7 and I was referred to a hematologist. CBC, thyroid all normal. B12 was on low end and MMA was slightly elevated. ANA was 1:320 and homogeneous. He initially questioned lupus but feels since I don't have the rash and normal inflammation markers then it isn't an option. He started me on B12 injections daily for 7days, weekly for 3 weeks and then monthly. Also on slow-fe daily. He tells me today that besides the B12 and iron there isn't much more he can do because my inflammation markers are normal. They did draw labs to look further into the positive ANA. He gave me the "reassuring" pat on the shoulder and said I am fine. At this point I am questioning if this is "all in my head" I don't feel like it is, but how far do you push before you accept the answer "you're fine" and just accept that this is how you feel? I am frustrated with myself and the whole situation. I am a nurse and have had other nurses tell me that it's time to go to Mayo clinic for answers. I guess I just don't know what to do and how far to go. This seemed like a good place to start, everyone seems helpful and supportive of each-other. Any recommendations out there?
If anyone could give me ideas or advice I would really appreciate it. I am 35 years old with two teenagers. Whatever is going on with me is affecting not only my life but my families as well. I am too young to have tingly messed up hands and feet, awful pain daily, confusion, bladder issues and the list goes on and on. Is there a point that you accept what the docs say and just live with it and quit looking for answers or help??
Hi & welcome. I'm sorry you're under the weather & not getting speedy answers. AI's can take awhile to diagnose, unfortunately. Here are things that came to my mind as I read your posts.
Re: your ANA of 1:320. ANA is positive in multiple conditions, not just lupus; so when it's positive, more specific tests for "ANA subtypes" are usually run. Did you get a copy of your labs? Do you see a bunch of "anti's", such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, anticardiolipin, etc.?
Have you read the ACR criteria for diagnosing lupus? Look in the "sticky posts" (permanent info posts), grouped above the user threads. Generally (not always) you must meet 4 of more of the 11 to sustain a dx of lupus. These may be met over time: envision checking each in indelible ink, once met.
Blood values---ANA and the subtypes---can vacillate as the immune system flares up then calms, which is another reason diagnosing lupus & its close cousins can take so long.
Now comes the blunt part! I'm just a patient, but I've never read or been told that you "must" have elevated ESR or CRP to have lupus. Both can also suggest bacterial or viral infection---i.e., they're very general, actually TOO general to be in the diagnostic criteria.
Same goes for rashes. There are a dozen or more lupus-specific rashes, but only two---discoid and malar---are in the criteria. Something like 70% of people with lupus get a lupus-specific rash at some point during their disease. But a rash isn't "required"---you could meet some OTHER four (or more) non-rash criteria, and have lupus without a rash. Also, UV rays often trigger lupus rashes in susceptible people, and spring is just starting.
Other thoughts. Have you seen a rheumatologist? Not only are they better at understanding & applying the criteria, they also tend to be fussy about the labs they use since antibody tests are notoriously tricky to perform. Since your symptoms could point to other connective tissue diseases akin to lupus, like MCTD, RA, etc., you need someone who knows them all. Also, there are several excellent books on lupus in most libraries.
When you mention your big toes, I also think of gout.
Not sure what your bladder problems are? There's an AI called Interstitial Cystitis that can elevate ANA. But bladder symptoms are tricky & don't always relate to the urinary tract. For example, I've had episodic problems over many years (without UTI's), with at minimally two plausible non-bladder causes: kidney stones and ovarian cysts.
It's frustrating, I agree. I had problems in adolescence, then struggled literally for several decades. I finally went to a teaching hospital rheumatologist---bingo---turned out to be a rarer presentation of lupus (ANA-negative, positive anti-Ro, very uncommon). Anyway, I hope you post more soon. Sympathetically, Vee
P.S. I had a lot of tingling in arms & hands, which may have been caused by low B-12. (I had that, too.) Bye for now.
The Following User Says Thank You to VeeJ For This Useful Post: sickINsodak (04-11-2013)
We are hoping that the B12 injections help with the tingling, but most days I can ignore that part. I had blood drawn yesterday for the rest of the ANA tests. But with the snow we got the past few days it may take a little longer to get them sent out. Since I work in healthcare I know that things can take awhile to figure out, but this started about 4 years ago. I went to the E.R at that time because I honestly thought I was dying, it turned out my blood pressure was 224/110. After 2 days in the hospital the b/p stayed down and they sent me home with no answers. My doc checked a vit d level because i was having generalized pain, it was low and i was started vit d and that was the end of it. About 2 years ago I had lap surgery to find the cause of pelvic/hip pain that would shoot down my leg and through my back. They found a lime sized endometrial cyst on the ligaments in the left pelvic area, no other areas of endometriosis seen..so the doc said I would be fine. That pain improved then a few months later the fatigue and overall pain started. Blood pressure continues to get very high and then back to normal. Then about 1 1/2 years ago the tingling started in my right hand. Sent to the ortho doc and I have moderate arthritis in my rt shoulder but normal c-spine. The ortho seemed a bit surprised at the amount of arthritis in my shoulder at my age. I then worked with a physical therapist who thought I possibly had thoracic outlet syndrome...until the nerve symptoms spread to my other hand. Being slightly stubborn I tried convincing myself that I was fine but apparently that isn't working so well either. I am working on finding a rheum doc but lack faith in the majority of docs in this area, I know how much most of them care about their patients and unfortunately the midwest doesn't seem to be much of an attraction for new or better docs. I really just want them to listen and realize that I miss my life and will do anything to fix this. I am tired of eating ibuprofen and tylenol like candy and not getting any relief from the pain. Hopefully these next labs will give some answers but truthfully I am scared they will be normal and I will be politely encouraged to get help for depression.
Hi, you just made me laugh out loud with "politely encouraged to get help for depression"! Doctoring for this stuff is horrible, it really is. On the bright (?) side, at least you're anticipating "polite". Here on the east coast, I got screamed at, sworn at, and called derogatory names.
Are you on meds for your BP? I ask because there are subsets of lupus: systemic (SLE), cutaneous (DLE), neonatal (applies only to infants), and drug-induced (DILE). Some very common meds have been implicated in DILE, including cholesterol and BP meds. The auto-antibodies most common in DILE differ somewhat from those seen the most often in SLE. In DILE, ANA is positive, and anti-ss-DNA (single-stranded, not double-stranded) and anti-histone are common.
Hand tingling also makes me think of carpal tunnel.
Are you far from Mayo? Are there teaching hospitals nearby? I found my rheumatologist's practice listed in an annual magazine feature. Another thought: if there are support groups nearby, for RA, lupus, and the like, some of those members might be able to recommend rheumatologists.
I forgot to ask if your doctors have done urinalysis (essential in lupus).
You sound determined (good), I know you'll keep trying. We'll look forward to your updates, next results, etc. Hang in there! Sending hugs, bye, Vee