To: Hi All
I have am 40 years old and for 10 years I have periodically have the following symptoms: lowgrade fever, body aches , right flank pain, extreme fatigue, joint pain ( my fingers are in so much pain I sometimes feel I cant close them , my spine is constantly aching, I have constant right hip pain) In 2003, I had multiple tests done, MRI, CT scan & just about EVERY blood test possible. No Rheumatoid Arthritis, Neg. ANA, Negative Epstine Barr. The only thing found was a " spot" of arthritis on my lower spine. Now its 5 years later and one again, I am just desperate to live a life like I did at one time- with out pain & fatigue.Because all Doctors that I have seen figures my " body aches were muscular- skelatal issues, I am currently under the care of an orthopedic. I have bursitis in the shoulders and get steroid shots from time to time. When I bring up my non stop hip pain , he seems to feel sense I JUST got an MRI of the spine in 2003, my pain is prob. just arthritis. Lately I have had to cancel some really important social events because of this " illness". I work in a lab so I decided that I need to take things into my own hands if I am every going to feel better. I did an ANA ( negative), ESR slightly elevated, Complement 3 and 4 were both high, and I am waiting for my Sojrens ( sp? ) antibody to come back. Weird thing is, I thought Id run the c3 & c4 to rule out possible lupus, But mine came out on the opposite spectrum that shows lupus. After researching, I cant find much about what high complement levels mean. I just am wondering if these complements levels being high have anything to do with my health issues. Im sorry to vent, I dont even know where to go from here. I think we all have somethings in common, We know we have health issues but are not sure who to channel them to to make us feel better. Please give me advice.
Yes the intenet has a little on high complement levels but of course with Autoimmune disorders the compements are low. So I will bring what I have to my Dr. next monday. Sad thing is because there is nothing pointing towards any autoimmune disorder, I guess I will be in pain for much longer that I thought. It really is depressing
I am in alot of pain. I have had DDD for years in my hips and spine the pain has been tollerable. Now the pain is in my legs, ankles and feet and the pain is unbearable. I just got my Complement C4 back and its high. My ANA isn't back yet so I have to wait on that. What can we do? Carla
I have ALL of the same issues you do! My Complement C3 levels are also high (209) but my doctor says it just means I have extra protein running around in my body. Huh?!? My Vitamin D levels are extremely low (10.5) and my BUN/Creatinine Ratio is slightly elevated (23). I am 38 years old and have suffered for over 11 years with Fibromyalgia. Since all of the rest of my blood tests are always normal I keep getting the "blow off" when I question why I am suffering. I feel like everyone just thinks I am a hypochondriac!
I am desperate for answers. If you have any I would love to hear them!
I am right there with you all! After suffering for 10 years, I was finally diagnosed with Psoriatic Arthritis after having a + HLA-B27 gene. My rheumy was certain I also had lupus and ran this Complement test (in addition to several others) and my CRP was elevated (1.3) and my Complement was high at 189. So I don't have lupus so it looks like it still points to my psoriatic arthritis. Ironically my psoriasis is mainly on my scalp and it didn't show up until I had been battling joint pain and fatigue for 10 years. I would definitely recommend googling the HLA-B27 or spondyloarthritis, which is part of it.
This is crazy, I have the same problems. I am in the Army and have been going through a medical discharge since October. Originally I was diagnosed with herniated discs and ddd until the rheumatologist also diagnosed me with fibromyalgia. He is running a lot of labs on me and they all keep coming back high for inflammation. I have a lot of symptoms for lupus but my complement levels are high and my ana is positive but 0 with the flourescent scale. I also get the butterfly rash on my scalp especially after being in the sun. My esr is high, c reactive protein is high. wbc was high. I am so depressed lately I cant take it anymore. The rheumatologist has run four different lab tests on me and still doesnt know what I have. Does anybody have an idea?
I've an idea, and the people in the Army hospitals should have more than an idea. You in all likelyhood have a mycoplasma infection from the immunizations you've received over the years. I got mine in 1968 from a typhoid vaccine the AF gave all of us in my little Ohio town after a flood. In the 9th grade my shoulders started falling out of joint, when I was in my 30s a chiropractor told me my lower disk looked like someone that was in their 80s. Before you get out and have to turn to the craziness of the VA, you should check with: http://www.immed.org/index.htm The standard tests you're going through aren't going to find the little vermin.
Not sure if you still look on this site... that being said, I would take extra vitamin D. When I saw Mary Wise, MD, ND in 2006 my Vitamin D level was 8 ng. Here is the list of what I take for Vitamin D. Doctor gives me Ergocalciferol 50,000 IU once monthly and Calcitriol 0.25 mcg twice weekly. I also take Citracal plus D3 (over the counter product, becuase I'm lactose intolerant). As well as a product called Ultra D-3 from www.nutraceutical.com . It is on the expensive side BUT my bone density levels have IMPROVED by taking 10,000 IU per day for the last two years. My bone specialist was SURPRISED, when I told her that even thu I'm on Medicaid that I pay out of pocket to see the nutritionist that first prescribed this to me. ANYTHING to get better!! Keep in mind that this is for ME and I've had severe deficiency as I have celiac disease and fair skin. Talk with your MD. If he/she will NOT listen switch to a different one until u get the help YOU need. This is about YOU... Ask you doctor, if i was your child or your sister what advice would you give me to HELP me get well?!! Blessings, Michelle (NOT a doctor)
Symptoms similar to yours, although I do have positive ANA tests. Quite high actually. Like you my C3 & C4 complements raise, instead of lower (as with Lupus) when I'm sick. I've been hospitalized 6 times in 2 years and have seen numerous rheumatologists. Still searching for a name for this disease.
I have had 3 positive ANA and neg Lupus factor negative RA Factor and have high protein levels in my blood as well as high Complement C3 . Hve my rtrun appt with Dr next week. How did you make out and if I can ask what was your diagnosis? I was even tested for Myeloma but am ok.
I have had 3 positive ANA and neg Lupus factor negative RA Factor and have high protein levels in my blood as well as high Complement C3 . Have my retrun appt with Dr next week. How did you make out and if I can ask what was your diagnosis? I was even tested for Myeloma but am ok.
Go to the link and begin working with a doctor who can help you reach the underlying cause of what is going on. Functional medicine aims to correct underlying causes of disease where so often medicine is treating symptoms.
All the comments have this vibe of "what do these tests say I *have*?" These tests are markers and are not specific for any one or two illnesses; they are clues. The diagnosis - the naming of some disease process - is not as important as a) what triggered the illness, and b) what keeps the illness going. If you take measures to correct these two factors, and you begin to feel better, what you call the disease doesn't really matter.
The functional medicine approach begins with assessing your ENTIRE medical/social(stress) history and invariably begins with correcting diet and activity first, before further tests and clues narrow the therapeutic approach. It requires a close working relationship with the physician and diligent effort (no quick fixes) from each over a long time to consistently reverse the processes and behaviors that have led to the mischief.
As concerns low D levels, you can get D3 over the counter at Costco, Walmart etc for cheap. You don't need a script. A D3 test will let you know what your D level is. Don't have the Doc. do a D2 test as they are different, unless they run it with a D3.
Loads of free info on vitamin D at www.vitamindcouncil.org Your levels need to be at 50-70 mg not the current 20 that is considered "normal". The more med problems you have the more you need D3. It takes time for your body to improve. I currently take 10,000 IU of D3 a day and my levels are at 57.
It should help with the bone and joint pain at the very least. Our bodies need D at a cellular level to work correctly.
Give it a try and let us know how you are doing.
something is causing your D levels to go next to nillo. have you got to the bottom of it? my D level was at 6. mine told me autoimmune is the source. I have connective tissue disease which ultimatly lupus is behind it. I am still digging! I do take mega doses of D2 an D3 an magnesium. it has helped with inflammation but I still have high C3 its off the charts!
A question : Have you ever been bit by a tick?
Many people do not recall a tick bite ,yet still have Lyme Disease - find a Lyme Literate doctor in your state. You can find one thru www.ilads.org
I was bit by a tick over a decade ago, nothing has been right since then. Much of same symptoms as you, and I finally figured it out. Starting treatment next month. It was a long journey but now I know. Your symptoms and blood work are too similar not to mention. Best to you.
Hi! I know this is an old post but I'm desperate and depressed so I'm reaching out. I'm only 23 and I don't ever get to live a normal life of someone in their 20s cuz I'm in constant pain. I was wondering if OP had gotten any answers or if anyone had any recommendations for me -
I have been diagnosed with Fibro but I feel like I'm in so much more pain than I should be. I take 300mg of Lyrica (suggested dose for FM) and antidepressants for the pain but it doesn't help, I'm take 2-3 pain pills a day and it would be more but I only get 60 a month from my doctor because they're VERY conservative with it. I have ankle, knee, hip, back, shoulder, wrist, elbow, hand, neck pain. Basically head to toe. The worst lately is my back, I'm currently waiting on the AS gene test to come back but my rheum isn't really thinking that's what's going on. My neck hurts so bad it wakes me up at night. My hands are so bad that I can't open jars, can only hold the steering wheel for a short time, and they're tingling from just holding the phone to type thus far. I have had a high positive ANA, 1:640, for several years but my doc says that some people just have that. High CRP but again, says that doesn't really say that there's anything wrong, and now I have high C3 203, but all I ever get is that these don't mean anything. I should be finding out about the gene in the next couple of days but rheum didn't think too much about that blood test - pretty much said if it came back positive that it didn't really mean I had AS anyways. I don't understand why I keep having blood tests done if none of it means anything. It's like the only tests that will mean anything to him are the RA factor and that lupus panel which is so frustrating. I think the doctor just thinks I'm a hypochondriac or doesn't take me seriously! Just wondering if anyone out there has had similar experiences or recommendations for me, I'd really appreciate it!
After a positive ANA they will dilute to see how high your result is (1:40, 1:80, etc) and yours is quite positive. They also then see the"pattern" which is helpful for diagnostics and run specific antibodies...anti-rnp, ds anti-dna, anti-ssa, antiss-b, etc what was your pattern and to which antibodies did you test positive. + ana is also seen in autoimmune liver, thyroid disease, mctd, not sure about AS, psoriatic arthritis, and inflammatory neuropathies but you should have nerve and muscle biopsies taken, emg/nerve testing, joint xrays etc ask to see neuro as well.
I was diagnosed with Scleroderma on April 6 2005 after having a weird feeling in my legs while on vacation....Went thru a lot of research before i found a dr that specialize in my symptoms after a through exam.the diagnosis was made......I was told that i had 6months to 2 years to live...I came home and cried and then got to work.....I found a little known clinical trial in Sc. My friend and i drove from stone mountain ga to greenville sc...Met with several drs......Place on an expertimental drug for 5 years after 2 years the drug was stopped and i have been in remission since 2009
Hello! Oh my goodness, I could have written the original post!!! I have been in severe pain for almost 20 years. I have not received a diagnosis on ANYTHING. I just got lab results back showing High C3C and C4C, but the doc says no sign of inflammation, and I am fine, right. I''ll have to write more later on my desktop, this tablet is too slow. But I will definitely be following this thread, and looking for a rheumatologist.
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