Ok! The test numbers were seperate, now bunched together. If anyone can read this, the first numbers are the result and secondary or following numbers are the reference interval. The test basically showed everything normal except the ANA, and I couldn't get anymore info on that (like a titer test). Don't know how that works but I had went back for more tests and they wanted to know why. I told them I'd already gone to three other Dr's for 2nd opinions...still no conclusion but they went by the tests I showed them and didn't take anymore. Told the Doc I had read there was no one test to tell. She said we did several tests that day, some to rule out and some to confirm (neg for RA). She stated, "we don't need to run anymore tests...we're sure!" Said if symptoms came on all at once it might be different, but since they were from my early years until now, that was more toward what they were suggesting. She said we know you have SLE but we don't have the means to treat at this facility...recommended a Rhuematologist. There ARE more joint & muscle issues not mentioned above...but you get the idea, just aggravated 'cause one day one thing will hurt, next day something else hurt and just back & forth with the joint problems.
Now, all of the above being said, I went to a Rhuematologist. After the tests mentioned below, all they had at that point was they said I was low on B vitamins was all they saw from 1st round of tests (couldn't afford to go back yet). I also showed this Rhum. the results from the bloodwork done at the health dept. before he ran this set; I don't have my results in front of me...just the test that were done, these tests showed nothing wrong but low Vit. B.
Vitamin B12 & Folate
Creatine Kinase, Total, Serum
Sjogren's Ab, Anti-SS-A/ -SS-B
Vitamin D, 25-Hydroxy
CCP Antibodies IgG/IgA
OK! Finally. Can anyone tell me what else I might ask for in coming to some conclusion to what may be wrong with me. No rashes, mouth ulcers, hair loss etc. Just all the other mentioned in above posts. Any suggestions would be greatly appreciated.
Forgot to mention, yes I've been bitten by ticks a lot when younger especially. Both kinds of deer tick...regular and spotted. Also, health dept. did say along with the Lupus, I also had a bit of OA or Osteoarthritis. They said when a flare from OA would come that my immune system starts attacking the OA flare, making it worse. Another symptom, I don't heal well from things like getting a tooth pulled (takes sometimes months to heal & stop hurting). I hardly ever get sick but when I do it is extreme. Mostly all I've been really sick from in the past is Strep Throat, and Sinus Infections, a couple of times I had Pnumonia. As I said though, when I get sick...it's real bad. I've noticed after a bug or insect bite the sore takes weeks to months to finally heal as well...sometimes leaving a scar.
Lupus can play hide and seek with your bloodwork. This happens with me but based on my symptoms my rheumatologist is treating me with Plaquenil and it helps. I also have fibromyalgia. You should ask about that especially because of the gastro issues you are having. It does sound like you need proper testing for Lyme to rule that out as well.
When you go for your next appointment insist on having Lyme, Lupus and fibromyalgia ruled out. Tell them of your financial situation so that they can hopefully economize on the tests and save you time and money. Good luck and please let us know what they say.
OK, some more questions:
When your joints hurt, do they ever swell? Or look disfigured?
Rhematoid arthritis can also hide in lab work. A friend of mine had problems since childhood, but became very prominant when she got older. Because the lab didn't show an elevated RA factor, she was told it was in her head. When her joints were all swollen, she stopped b y her dr. office and insisted that he see her hand. She got a dx that day. Now all her labs are crazy, but initially they were not.
Another question: Do you have fatigue?
Do you have tingling and loss of feeling in extremities?
Just a note: most people if not all that have an autoimmune disease also have low vit D levels. Since yours is not low, makes me think otherwise. Be sure and get copies of your labs. Insist on getting the actual lab results. They could be right on the border and or they just don't mention things. I've had crazy lab work and the dr. tell me they are fine. This has happened more than once. When I walk through the door, I tell them I'm gonna want a copy....what will I need to do to obtain a copy of any test done.
Can you describe your joint pain? When symptoms are flared up, is the joint pain severely debilitating or can you press through it and continue through your day?
Praying for you Adam, many of us here understand the frustration of having a mystery illness. I'm very thankful for my family here at medhelp. They really helped me through a very difficult time in my life. Because they had been thee too.
God bless, Kara
Ok! Joint usually not swollen, or red, or hot. However, I have had Bursitis where of course it swelled so bad once or twice I had to have it drained, and shot in the joint. Also had shots in wrist, directly into Ganglions. Other than the bursitis on occasion and the ganglions, no swelling or redness, just pain severe enough to lose function in wrists for couple of days or more.
My knees! When at around age 12-13, I played catcher in baseball. Started having bad knee problems. Dr. said it was Osteochondritis and I'd grow out of it (on other hand @ same time he was telling me that's what caused it, I got tall fast and he said my body was outgrowing the catilage). My right knee used to always lock in a bent position (not in some yrs) and the only way to get it back straight was grit my teeth and kick my leg out straight, very painful thud and almost pass out from pain. When I was in teen yrs. I was put on high dose of Prednisolone (prednisone?) which helped. My son is about to turn 18 & said he's having problems with his knees. I never knew because he doesn't live with me.
I do have tingling sensations but not really loss of feeling. The tingling usually happens when in a bent position though, like proping my head up to watch TV...hand & fingers go tingling & numb in just a few min...less than 5-7min. My legs do this sometimes too in a normal sitting position and it will start from the feet and work upwards.
As for joint pain in general, I can make it through the day it's just very aggravating. It's usually like a headache in my joints...an aching pain with what feels like itching, like I want to peel the skin back and scratch it. The shoulder impingement and wrists are debilitating to the point of either weakness, or pain is just so bad I don't want to move them. An example is; I might be able to swing a hammer all day w/ no problem, but get home & fix a cup of coffee and almost drop it on the floor when I pick up the cup, because the pain and/or weakness hits right then. Seems like certain movements set it off like turning a screwdriver, couple of turns, that's it! Back pain will start when I lay down, ease off in sitting or standing position most of the time but not always. This would be lower & mid back.
I have a copy of the other test results but they are at a lawyers office. I failed to make myself a copy because I was in the middle of a move. Applied for SSD in 2008 for Lupus & PTSD, Anx, GA, MajDD etc. I was of course denied, reconsideration denied, ALJ denied. ALJ said no credible evidence in medical records to back Lupus, even though the fed or state funded health dept. was where dx came from. Also said I didn't return for follow-up w/rheum so must not be severe! I'm severely out of $$$ was the issue, but I know how they are, deny, deny, deny!
And fatigue yes, very much so. Lot of times don't want to get up in the morning even though I'm wide awake & hurting. Also weakness/fatigue/pain (??) in joints as well. Joints don't look disfigured except for kind of knobby knuckles, not twisted or anything. Speaking of knuckles, pain not symetrical, comes & goes in different fingers on different hands. These will turn red, swell a little bit, but not the other joints. I suspect this is the OA health dept. also said I had. Not had any x-rays yet to confirm.
Trudie, is fibro what causes the gastro issues? What meds do you say helps this, I am unclear on that? Or do you mean that fibro is cause of gastro and they treat YOU with Plaquenil? Would you care to elaborate on the stomach problems? I'm either (usually) with diareha, or constipation. Diareha is everyday part of life since teen years, as are the severe cramping problems. Feels like someone pulling on a nerve in there, usually 3-4 repetative "jerks" that bring me to my knees or rolling in the floor. Cramping will usually stop just as sudden and I'll be ok the rest of the day. Sometimes the cramps feel like there right behind the scrotum...say 50% or more. I have been checked for hernia a long time ago but was ok. Not been chkd in some time, but problems were occuring way before I was checked the 1st time.
Also, I've always, always, since high school weighed 165lb, always! No matter what I eat! Sweets, steaks (even the fat if I choose), Thanksgiving dinner...doesn't matter...always on the money at 165. The recent 2yrs and especially the last 6-8 months, I've been bouncing from 173 to as low as 155. Sometimes in one day I can gain or lose say 7lb, this is weighing the same time every day too. Sometimes I'll eat a lot & lose or won't eat much but gain. Not always though, occasionally the quantity will make me gain instead of lose but I have to really shovel it in to gain weight. ???
Hi Adam, It looks like this post got lost in the Thanksgiving/Christmas bustle. I know you are still having trouble. But I would like to add something to this post. There is an herb that has helped me with the chronic diarrhea called "slippery elm". It sooths the whole digestive tract. You can either buy it at a health food store or through a mail order place like Puritan Pride. I perfer is over Immodium because Immodium works too well. And I also feel better taking something more natural.
Please keep us posted.
Hi karajo, being a Spaniard, your name makes me smile. Last night, I decided to start looking at for answers to my health related questions, since it it seems that there is "nothing" wrong whith me, but I keep on having a reacurring health issue or issues. I cpontinue today and that's how I ended here. I'll give you a bit of history: As I said before, I am Spaniard, famale, 58, healthy eater, with a sweet tooth binging "need" from time to time. Used to eat a lot of dark chocolate. I had two pregnancies with natural deliveries, do not like medication unless necessary to take care of serious issues. Was anemic since childhood until the end of menstruation. Have gum decease since childhood. Have arthitis with enlarged nucles since childhood, pain starting in my therties and deformed finger joints starting in my forties. Pain in one toe since my teens and deformation staring in my mid fifties on that toe and one more toe as of the past year.
I have had bad back most of my adult life but having had Chiropractic treatment since the age of 19, it has been a blessing. Have herniated disks. Had very painful, heavy and long lasting mestrual periods since the age of 12 till my 40s and my periods lasted till the age of 54-55. My mother died of breast cancer at the age of 42 and my father of prostate cancer at 85. I have always felt I was a healthy woman with some discomforts here and there. Back pains, muscle pains, deep tissue pains, severe headaches from time to time, constipation most of my life and some heartburn after my mid 30s. Healthy blood preassure 100/60-65 most of my life, borderline bad cholesterol with high good good cholesterol that balances it out the bad.
Since 1995 more or less, I have been having a problem with abdominal bloating that at first, would last a few weeks, also, for the first time, my feet and ankles would swell up after a flight or even a cruise. In 2004, I had my first episode of bloating accompanied by pain, all kids of test, and nothing was wrong. "It's gas, or women's isssue, or..." Hado some milder ones and in 2009, 2 days after my most severe one up to that point, I develop petechiae. We thought, even the dermatologist after a biopsy thought, that the petechiae was an allergic reaction to the antibiotic containing sulfur. I am not allergic to shellfish. The morning after I had my first pill, I could not stand still, I would have pain that would start at the back of my knees and travel to my feet, both at the same time. By the time the pain would reach my heels, I would have to move becase the pain would became too intense. After all kinds of testing, again, all negative, again.
Mid January of this year, I notice tingling on the right corner of my upper lip. By the end of the month, I had the first signs of what would become a very bad cold sore with a couple of small spots above the sore that never got crusty. At the same time, that the cold sore was at it worse, I develope this itchiness on that side of the face, mostly on the smile crease, the side of the nose and the cheek. A month later and after taking oral and topical medication, the scabs fell ot, I still have redness where the spot were and the itchiness continues. Still, as this was going on, I am going through my latest abdominal bloating and pain episode. I went to a gastroenterologist and based on the fact that all the test results I brought and negative, he recommended I have a bacterial overgrowth test. that will be on Tuesday. On Wednesday, I will se a hemmatologist to see why my white cell count is 3.2, on Thursday, I will see my gynocologist to go over what ever he thinks about all this. And, so here I am, after seeing small signs of petechiae on my left leg last night, decided to look at the internet for ideas or answers and eventually I got to you. I am sorry for the lenght of this message, I thought It would be better one long and clear that a few back and forth.
I hope you have a though or suggestion. It will be greatly appreciated.
With much appreciation,
After all that! I forgot to write that I also have Raynaud's disease since from age 14-15. Nothing to do with winter, it can happen anywere and even in summer. I do not need gloves, they do not help. As long as I don't shiver, I do not have a problem. So, I always were layers, specially, camisoles and cashmeer as soon as teperature goes below 65.
Thank you again for any response, and I do mean, any.
Sorry for taking so long to reply. I've been out of town and then had company.
Is Kara a Spandard name?
Some suggestions for you to consider are:
RA (sometimes the lab doesn't show this early in the disease)
You can have Raynauds w/o an autoimmune disease.
The sores around your mouth could be allergies to something you are eating. I know my daughter claims she is allergic to anything citrus. It made her face and around her mouth break out.