To anyone who may know:
I have had a variety of symptoms since I was a teenager. I can't seem to get an answer. Just recently I was diagnosed with epilipsy which I just don't think is the answer. It first started out with sore wrists and ankles, constipation with blood and mucus, and severe head aches. I also got rashes and hives. I would have spells of feeling well then it would hit and I would feel so fatigued and almost like I had the flu. I have had plueritis. Most of the time my kidney function is completely normal however I have burning and flank pain at times and I was given a sulfa drug just in case I had an infection because I had a little blood. I had to stop the drug because I broke out so I don't know if the possible infection is gone. My CRP and Sed rates are normal most of the time. CRP has increased a few times. Sed rate is usually 3. I have Ryanauds and they said that is why my ANA is high which was 640, speckled. Blood work is normal. Anti DNA normal. They said I don't have an autoimmune disease. But I keep getting these rashes and bruises and I feel like crap. Even my veins hurt at times like I have had a needle stuck in them. I also have costrochondritis. My tongue tingles and my lips tingle as well as my hands and feet. My tendons swell and hurt. I cannot get rid of the constipation. I also get low grade fevers. Could I have a chronic virus or parasite that causes my ana to be high and affects my brain? What kind of doctor should I seek out now? I think they think I am nuts and sometimes I wonder too because I don't know why this keeps happening. P.S. I also get sores in my mouth and nose.
Last edited by VodoSiosk; 08-12-2009 at 01:10 AM.
Reason: Forgot something
hi VodoSiosk welcome to the message board! terrible circumstance but glad to have you with us! sorry you are having such a horrid time!
please remember that i am just a patient and it is my non-medical opinions that i am voicing here ...
my but you do check some of the lupus criteria ... i am not implying that i think you have lupus ... that is for the docs to test and dx.
have you read the stickies at the top of the page (3 permanent threads) there are 11 criteria used in dx'ing lupus and you need 4 of 11 (not at the same time mind you) VeeJ puts it so eloquently so i hope she also replies to your message.
ANA is positive in quite a number of auto immune diseases and lyme disease too (i think - someone please correct me if i am wrong)
the lupus go to doctor is a rheumatologist ... can you speak to your GP/PCP and get a referal? just so many things *sound* like lupus
PS: you are not mad and neither is it in your head - it is actually in your body (sometimes it does get the head too - ulcers, brain fog etc but you get the drift)
so you keep posting when you can and we will be here for you and see you thru this best we can!
the short answer is YES!!! 3-5% of lupus patients (i like the term lupies) continually test negative according to author of 'The Lupus Book' Dr Daniel Wallace (you can find his hardcover at most libraries and bookstores) last edition i had was the 4th.
he has a whole section on Negative ANA! that book was one of my greatest sources of infomation until i loaned it out and cannot remember the details ...
ANA (if i get this right) is only a threshold test and one of a host of tests - there are very specific auto antibodies that can be tested. some people only test positive to one out of 16 (scared of misquoting)
other memebers on this board are well versed on this subject ... sure you will get more responses soon! then little peices start fitting into place ... GOOD LUCK and what ever dx you get you know you have people here!
if you read back to previous posts or serach for *negative ANA* it should bring up tons of threads. there was a specific poster (cannot remember her name) she tested negative for years and they never dx lupus which lead to serious complications and near fatal, she went to Dr Wallace and is now an advocate to the cause!
You don't specify what kind of doctor ordered all these tests you reported, but if it were me, I would take copies of those to a Rheumatologist for his opinion. You certainly have some symptoms that may be better looked into by Rheumatologist.
I have a question. I keep getting these bruises and I don't know why because my blood counts where normal. I know I am not hitting myself. It first starts out as a tender spot, it turns red after a while sometimes itches and then bruises. I have them on my arms and legs.
if you can take a photo of the area and take it with to the doctor - definitely as for referal to a rheumatologist!
write a list of questions that you have and if possible write down what the docs answers ... appts are usually info overload and i forget almost everything as soon as it is said so i write everything down and look over responses in my own time ...
not sure if this is someting to do with APS (clotting) - sorry i have no experience with that form.
Hi & welcome. I agree with what the others posted about seeing a rheumatologist.
About bloodwork: not sure WHO told you that ONLY anti-ds-DNA & anti-Sm are possible in lupus...? Dr. Wallace charts *16* autoantibodies & complement levels in the hardcover the others mentioned earlier. Yes, those two are considered the most "specific" to lupus, but other findings are possible, is what I mean. (I'm a good example of this concept: I fooled my local drs. by having lupus with only "anti-Ro".)
Another angle: what do your rashes look like, where do they appear, do they scar &/or depigment, etc? FYI, there are MORE rashes possible in lupus than the two best-known ones, discoid & malar. Dr. Wallace discusses some (not all) of those.
The best way to determine if a rash is lupus-specific is deep-punch skin biopsy, plus immunofluorescent stain tests, done by a dermatologist or dermatopathologist. While not always conclusive, these tests are often very useful tools in ruling lupus in or out.
Also, I hope you've seen a gastroenterologist---or some other "ologist"---to find out why you have blood in your stool. Can't ignore that, ever!
Obviously I'm only a patient, so please read above in that light. I'm so sorry for your problems & your frustration. I finally took myself to a teaching hospital rheumatologist, else I'd still be looking for answers, I swear. So I really hope you "ramp up" also, and locate drs. who take your problems seriously. Please keep at it! And post more when you can, OK? Sending you my best wishes, Vee
Perhaps, are you on a anti-inflammatory? I know that I had blood in the stool from Advil use many years ago, and it would also account for the bruising. I still take the aspirin a day, because I have heart problems, but I cannot take Advil or any other anti-inflamatories as they killed off the celia in my small intestines and caused major GI problems for me that took years to get over. Even on one baby aspirin (81mg) I still bruise very easily and bleed very easily with cuts or injuries. I just thought I would run this by you.
YIKES! i just googled *cod liver oil side effects*
(wouldn't eating sardines be a healthier, natural way to get fish oils?) ... i would discuss all supplements with your doctor!!! below is a piece (this is off the internet so please bear that in mind)
Omega-3 fatty acids can interfere with the blood’s ability to clot, thus increasing the risk of hemorrhagic strokes. By inhibiting clotting ability, it can also raise the risk for internal bleeding. Supplements should not be taken by anyone on anti-coagulant medication, anyone who has a bleeding disorder, or anyone with uncontrolled high blood pressure, a condition that already places them at greater risk for a stroke. Fish oils also should be discontinued two weeks before having surgery and one week after, to prevent complications from the blood’s decreased ability to clot ...
... people with diabetes should only use cod liver oil under the close supervision of a doctor...
... Too much vitamin A can cause birth defects, so amounts should be limited for women of childbearing age. It is also that believed that too much vitamin A can interfere with bone growth and make the bones prone to fractures. Vitamin D is also dangerous in large amounts, and overdosing on the vitamin can be toxic...
...In large doses, fish oils can suppress the immune system, leaving the body more vulnerable to infection and disease. Anyone whose immune system is already compromised should use caution when taking cod liver oil supplements...
PLEASE get to a doctor and let then look at your symptoms, factors, tests and most importantly their medical experience.
remember dx limbo is a place most of us meet and is very trying and hard but we always have to KEEP PUSHING until we get the answers and keep asking - things change with time & so will the questions!
look for a doctor that you can have a good relationship with, talk easily to as this will make the years forward as easy as possible for you ... find a doctor that is willing to respect your wish to manage things as naturally as possible but he can do the labwork, bloods etc and make sure that things inside are doing there things as naturally as possible too! not too much of things that can cause organ damage ... prevention VS cure.
also, have you noticed any *reactions* to sulfa foods/drugs, found in loads of natural products ?
(i post on multiple forums to get as much input as possible)
Angel, thanks for posting this info. I know I had to stop taking Vitamin E as it also has blood thinning properties. I was puzzled by the mention of sulfur drugs and sulfur containing foods as I almost died from a reaction to sulfur drugs many years ago and have developed multiple detrimental medication reactions since that time. I posted on this subject in the fibromyalgia forum here. I know that a lot of us with compromised immune systems or immune system disorders seem to have this problem. I cannot stress enough as to being extremely thorough when discussing adverse reactions not only with your physician but also your pharmacist, and if it is applicable, a dietician. I know that even as cautious as I have tried to be since my first bad experience with a medication, I have had times that similar meds were given or a concern was ignored or overlooked and I ended up having a problem. I also add only one new med, or food or supplement at a time, and I half those if possible, in order to avoid such things happening again. Always pays to be thorough and cautious when you already have a systemic illness such as this one.
A parasite (bacteria) which affects your brain and causes the symptoms you describe is borrelia burgdorferi.
I'm not a doctor but I have the same symptoms as you and that was the cause for me (of the vein pain/inflammation, tingling tongue/lips/hands/feet, low grade fevers, costochondritis, tendon pain, mouth sores, rashes and bruises).