I really need some help. I have been seeing doctors for years for signs and symptoms that keep increasing and have been told everytime its all in my head, anxiety, stress or my new favorite "there's nothing medically wrong with you"
I will try and keep this brief but not sure how well that will work.
I haven't felt normal for as long as I can remember, but the last few years I've been so much worst. I am a 27 year old stay at home mom of 3. I have a pretty good life and have normal stress. Since my first child was born I've been "not right". As of right now my list of symptoms include (these all come and go in different combinations)
- weight loss of over 15lbs since December. It yo you's up and down but I lose more then I gain. I was 145lbs before Xmas and today I am 127 and am scared to keep losing because I am 5'10.
-lack of motivation and stamina. I'm tiered lots but not all the time and I can usually fight it. Most nights I'm in bed by 9 but some nights I can't sleep and don't feel tiered, its too strange.
-hot and cold intolerance. I don't seem to have a happy medium at all and most times I'm too cold. Symptoms severely exaggerate in the heat
-muscle and joint pain. Right now my wrists and hands are really acting up.
- bad acne that's extremely painful on my back and neck
- eyebrows and hair falling out. Thankfully the eyebrows grow back before it gets too noticeable
-numbness and tingling in my extremities
-strange head episodes that cause me to feel like I'm going to pass out and my vision has gone black or caved in. I get lots of brain fog and feeling like I'm not all with it.
-pretty much constant chest pain, sometimes my heart races
- jitteryness, feeling like I'm shaking on the inside
- photosensitive. I cannot go outside without my sunglasses and the sun makes me feel ill somedays others its fine.. Or maybe just shady days. I feel strange and ill when I've been in stores too long, I think it's the fluorescent lights.
I'm sure there's more that I can't think of right now. I just want my life back so I can be a good mom everyday not just a few days here and there.
List of tests I have had done include
ANA: positive speckled (which means nothing on its own but still leads me to believe this is autoimmune)
TPO: <10 (<50)
Rf factor negative
Anti dsdna: 5 (<160)
Tsh has been all over the place since 2008 but stays around 1.5-3 range. Ft4 low end of normal.
My sed rate was normal.
Anybody have any ideas? I'm at my whits end with all of these and need ideas before I try yet another doctor
You need to see a rheumatologist, as you have many of the classic symptoms of lupus and a positive ANA with anti DS DNA as well. These should be reviewed and repeated. Your DNA antibodies are low, but usually these are zero. Do you know the ANA titer (expressed as a ratio like 1:160). Whoever has been implying that this is in your head needs to have THEIR head examined. If you have seen a rheum who blew this off, go to a new one. Take your previous results with you for baseline. Make sure they also check your anti-thyroid antibodies as you may have Hashimoto's as well, an autoimmune disorder of the thyroid that can co-exist with lupus. Be sure to get a urine check for any signs of kidney involvemet, and a CBC for signs of blood involvement. Good luck, and let us know how it goes.
Cipro antibiotic sounds familiar I think I was on it once a few years when I kept getting recurrent gum infections. This was Definantly after my symptoms started. My symptoms seem to have just increased with each pregnancy.
As for lupus I don't meet 4 of the 11 criteria. I had one summer when I was a teenager where everytime I went outside I broke out in hives (they told me I was allergic to the sun lol) then it went away and a few years after I would just turn tomato red upon entering the sun and get a bad headache. Now I find I do ok mostly as long as I'm not under direct sun, I wear my sunglasses and keep my hair down. I always get a nasty burn despite sunscreen and a nasty headache without sunglasses but I am very pale. I just went for a walk with my kids. It was fine, I was wearing long sleeves, my hair down and sunglasses and I walked 2 miles. Most of the time I was shaded in the trees but when I got out of the trees I got overheated and slightly dizzy. I'm inside and I feel ok though, chest pain is worst and so is my wrist/hand pain but I was pushing 2 30lb kids in a stroller. I also do t have any rashes, the closest thing I get to a rash is the occasional ringworm looking spot I get once every blue moon. I get one or 2 max somewhere on my torso or upper leg that start out as a tiny red spot and get as big as a quarter over time with a hollow scaly centre. It's not itchy or painful in anyway and I'm not sure if they are photosensitive because they are never exposed. Doctor said fungal but the go away on their own and don't respond to treatment.
I seem a rheumatologist in march. She looked me over quickly and told me my pain was from lax ligaments and I need to do core strengthening and physio. She also told me that my hair falling out should only concern me if I have to comb my pillow and never commented on my weight loss at all, probably because I am at a good weight still for my height. I went to see her because another doctor diagnosed me with fibromyalgia which the rheum took back. That referral took almost 4 months!
I have no idea what the titer is honestly. The results paper only says ANA positive. Pattern: speckled. Centromere negative that was on November. I have been suspecting thyroid issues but nothing extrodinary to cause this many symptoms is showing up. I have been diagnosed with every possible anxiety disorder in the last year and I was never like this before. I just need to get this figured out before I actually do go crazy.
Also not sure if its relevant or not but I have a very large lymphnode in my neck. I have had it for as long I can remember. It's over an inch long and is always swollen, sometimes more then others. I seen a specialist about it 6 years ago, he felt and told me it was nothing to worry about its just a reactive gland. He then left. So my question is reactive to what? Why is it always so big. I'm not worried about cancer since its been there for so long but what could cause a "reactive gland" to react so much. So confusing.
That is relevant, as many lupus patients get enlarged lymph nodes that fluctuate in size. Have you ever had low white cell counts, low platelets or anemia? One way to get diagnosed is from a skin biopsy of the rash. The derm must do immunofluorescent studies to look for immune complexes in the skin, called a lupus band. When you see a Dr next time, ask them to re-do the ANA with a titer, which shows how positive it is. The higher, the more meaningful, in general. Many of the lupus symptoms are not listed on the criteria list of 11, and the ACR has recently revised the criteria to include more things. I would pursue the autoimmune path to diagnosis and find a Dr., a rheum, that will listen and try to help you. You shouldn't have to keep struggling like this.
The Following User Says Thank You to ladybud For This Useful Post: Soconfused27 (05-04-2013)
Hi, Soconfused. Your description of targetlike lesions caught my eye. After decades of various problems, in my 30's I started getting eruptions that started in a very low-key way, as raised red bumps that looked like mosquito bites but didn't itch. Overall I felt like crap & saw various doctors for fatigue, pain, longstanding GI problems, migraines, etc.
About 4 years in, those same red bumps would reappear but now expand into perfect red circles with clear centers. Then the circles would expand further, losing perfect circularity. At its most complex, some rims intersected one another, plus I'd also have some bumps and some perfect circles. i.e., I was exhibiting three different stages of the same lesions. My suburban dermies (many) did two skin biopsies & came up with nothing useful (e.g., flea bites, stress/mental problems----grrrrr!)
I finally sought out a metro teaching hospital rheumatologist, and also saw a dermatopathologist he hand-picked. Blood labs finally revealed anti-Ro, and the rash was diagnsed as Subacute Cutaneous Lupus Erythematosus (SCLE), the annular form. These findings (and others) plus my lifetime history added up to systemic lupus, but the milder side, meaning no major organ involvement.
BTW, there's second form of SCLE called papulosquamous a/k/a psoriasiform. It looks like psoriasis but isn't.
In hindsight, the many skin specialists I saw locally and my other suburban "ologists" seemed to know only two lupus rashes: discoid (scarring) and malar (facial butterfly). I later learned there are at least a dozen lupus-specific rashes, and that the one I had isn't too common. Worst of all? The one I had was described and named 22 years before I got it figured out: my suburban dermatologists and rheumatologists were horribly out-of-date. (Pompous, snarky, and foolish, too, but that's another story. )
If any of the above sounds potentially useful, you should check out the lupus board, especially the "sticky posts" (= permanent info posts) located above the user threads. But I'm only a patient, so please take what I wrote in that spirit! In any event, I hope you post more either there or here. Please do keep trying. Sending my best, Vee
Last edited by VeeJ; 05-04-2013 at 04:55 AM.
Thank you both for the replies. It sure is nice to not feel so crazy every once in a while. They never even told me about my positive ANA I only found out about it once I requested a copy of all my labs since 2008. The ANA was only done in November though. I asked about it and was told a positive ANA means nothing with no other positive tests. I would think that with a positive ANA and my list of symptoms it should warrant further testing. Anyways I plan on going back to the doc yet again this week because I am only getting a couple days break between feeling terrible where even a few months ago I would feel fine for a week or more. Are there any tests you would suggest I have ran. I plan on going in with a list of tests and not leaving there until they order them. I have so many partial pictures but no thorough tests so far I have
Tsh, free t4, free t3, TPO, TSI, TGAB, ANA with a titer, on my list.
I have has numerous CBC's and liver/kidney tests all is well there. I did have protein show up in my urine twice but they because it wasn't there the next they said no big deal (it was +3?)
Also as far as the rash goes mine starts as a small mosquito bite red bump and expands into a big circle (mostly round) its noticeable but not bright red, more like a light red. As it gets bigger the middle hollows and the centre is dry and flaky. I just had one on my right side towards my back that just went away. I should have taken a picture cuz they don't happen often at all. I only ever get 1 or 2 at a time and they are gone for months. They don't hurt or itch
There is an ANA panel that measures other related antibodies that could be done, but specifically you want sed rate, CRP (inflammatory markers that are general supportive evidence but not specific to any one condition) C3,C4 (complement that is used up and decreased in inflammation), anti DS DNA, anti-Smith (two very specific antibodies for lupus), SSA (formerly anti-RO), SSB, RNP (for mixed connective ntissue disease) anti-SCL (for scleroderma) and RF (for rheumatoid arthritis.) If you have to hand pick the most important, the ANA with titer, anti-DS DNA and anti Smith, SSA would be the ones, as your Dr may not want to do them all on first round. A urine of 3+ protein is important even if intermittent, so a urine would be good to repeat. Good luck-you have to fight tooth and nail for yourself to get a diagnosis with these AI conditions, so be assertive and even a PITA if you have to be to get answers. I would also ask for an anti-TG antibody (one of 2 thyroid, TPO is other) because people with Hashi's can have one or both elevated, and this wasn't done apparently. Also, an ultrasound of that node would be helpful to document size. It will probably shrink if you get on treatment later,
Last edited by ladybud; 05-04-2013 at 10:14 AM.
Reason: added info
Hi. The first time my SCLE lesions expanded into rings, I only had a single one, which then faded without scarring or depigmenting. Then every few months, new ones, but more each time. Got 3-4 times batches each. Mine didn't hurt or itch either. Steroid creams did nothing.
If this rings even tiny bells, look at the lupus board & also look for pics. I honestly think both SCLE rashes are worth investigating, given your other symptoms.
As Ladybug has said, rashes can be tested, so a rash can create a separate & useful avenue of inquiry separate from blood labs & urinalysis. Also, a rash may fulfill the criteria for photosensitivity.
BTW, if you have *any* kind of *lupus-speciic* rash, you do have lupus to some degree. By "some degree", I mean it could be less than systemic (fewer than 4 criteria), or milder systemic (4 or more criteria but none that are organ-or-life-threatening). Actually, serious cases of systemic lupus are easier to diagnose than milder cases.
Just give a shout if you this doesn't make enough sense & you want something rephrased. BTW, you are so NOT crazy. And I agree that sometimes one must be a PITA. (I actually had to stop & mull what PITA means! One of my several working brain cells must be taking a day off?) Hang in there & keep reading & writing. It's too much to absorb in a day or two, but you'll just keep gaining traction on what you know, what it means, and what you need to do next. Bye, V.
Last edited by VeeJ; 05-04-2013 at 12:27 PM.
Reason: added sentence
This is for LADYBUG. I think I just now saw what you meant about a change to the ACR criteria for lupus: the 2012 change that cites the same old criteria (the SOAPBRAINMD mnemonic) but list two scenarios that may create a diagnosis:
(1) biopsy-proven lupus nephritis with ANA or anti-dsDNA antibodies; or
(2) if 4 of the diagnostic criteria, including at least 1 clinical and 1 immunologic criterion, have been satisfied.
Scenario 1 looks straightforward, but how do you understand Scenario 2?
(a) Are "immunological criteria" antiphospholipid, lupus anti-coagulant, anti-DNA, false-positive syphilis, and anti-Sm?
(b) I wonder which, specifically, are the "clinical criteria"?
Hmmmmmmmm...! You've pointed out an important change that people with questions should be made aware of, yet I, for one, don't really understand that last aspect. Do you have any further insight? As always, best wishes, Vee
This is a P.S. for LADYBUG. Oho! This criteria change is looking stranger & stranger!
I found a detailed chart that answered my earlier question of what's considered "clinical" vs. "immunological".
The whole ball of wax seems to be called "2012 SLICC SLE Criteria" (SLICC stands for " Systemic Lupus International Colloborating Clinics")...?
It really IS more expansive. Right off, you can see many things things we talk about all the time that aren't cited at all in the 1997 ACR criteria---or else are cited "between the lines" in ways patients are unlikely to recognize. e.g.,
More precise definitions for synovitis, serositis, renal signs, neurologic signs, leukopenia, and thrombocytopenia.
And the immunologic criteria are now 6 & are very precise.
HOWEVER, the articles I just read on the new "2012 SLICC SLE Criteria" still cite the old 1997 ACR criteria, which are seemingly still in use, even though the new set was tested & found to be better at classifying more cases & also at excluding patients who aren't truly "systemic".
One article actually says pointblank that the new SLICC are an *alternative* to the 1997 ACR.
So I'm still confused on how this new info fits into the older info... but it sure does look valuable! I hope you're having a good weekend. (I sure sidetracked myself!) My best, Vee
I had an awesome day today, out on a hat and sunscreen and spent the entire day outside in the sun working on the yard. I'm a little achy now and have a nasty sun burn but really I'm fine. Days like today make me wonder if I'm delusional.
Anyways I just went through my old blood work and in November I had a few of those tests done that you listed.
ESR 8 (0-19)
Rf screen negative
C-reactive protein 0.2 (<8.0)
C3 1.02 (0.80-2.10)
C4 0.21 (0.15-0.50)
On paper I look healthy as a horse. Should I still ask for year tests repeated? I think part of the problem is I seem to go for all my testing when I feel good or at least decent because at my worst I can't drive. I just wish my head could be clear like it is today, everyday!
Confused, I'd problably aim for an endocrinology follow-up, including the tests you listed earlier, both due to your symptoms & because that's an area you haven't had explored in depth. I'd want an endocrinilogist, btw.
Is your constantly swollen lymph gland proximate to your thyroid?
I'd wouldn't cross rheumatology off my list, just move it to the back burner for now b/c you saw one in March & basically hit the wall. If I went again, I'd want a new one, not the one who in March (1) described your ligaments as "lax", and (2) said your hair loss was a problem only if you have to comb your pillow. (I found those comments weird, snarky, and unhelpful medically.)
I'd think your unintended weight loss of 30 lbs. has to mean something!
Because you've cited two skin eruptions (long-standing painful acne-like problem on back/neck, and the occasional targetlike thing that's possibly fungal & possibly not), a dermatologist might be another option. Keep us posted on what you do & what happens. Wishing you clearer insights, Vee
Actually, the comment about your ligaments being lax can be medically important, as lax ligaments occur in RA, and that is part of what causes the deformity in joints. But I agree with Vee that a different rheumatologist would be appropriate, as well as the endocrine follow-up for your thyroid gland and node. The target-like rings could be biopsied by a derm when they appear next, which actually could give you a diagnosis. About 40% of RA patients have neg RF tests. An anti-CCP blood test is more sensitive for RA and I would ask for that with rheum, as well as an xray of your worst joints, as erosions, if they are present, is diagnostic of RA.
Thank you very much for the detailed responses, I really appreciate it. I'm back to feeling like I've been hit by bus again today. 2 whole days of feeling good this time and back to the head symptoms. It's tough because there's so much that needs doing and I end up doing more then I should when I feel ok, but its still not enough. How some people get through an entire day with energy on only 7-8 hours sleep is beyond me lol.
The swollen gland is on the right side of my neck, just under my jaw so slightly up from my thyroid. I will be booking in to see the doctor this week again and asking for referrals. Unfortunantly referrals here take months.