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Old 08-23-2011, 06:30 AM   #1
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Can An Autoimmune Disorder Not Be Detected By BloodWork

ok so, i've been to just about every specialist there is and, pretty much am about to give up on figuring out what's wrong with me. My symptoms are endless and yet all i've seemed to get a diagnosis for is poly cystic ovary syndrome, and GERD(Acid Reflux). The last specialist I saw was an immunologist who said there are "so many things I could have" but, I may never know because, not everything will show up on blood tests. One thing is for sure she said "There's no doubt in my mind you have at least one if not more things wrong". My last blood tests came back with my complement total high and a few other benign discrepancies that my doctor wrote off as nothing significant. I just want to feel healthy. This quest to find out what's going on with me as left me feeling pretty hopeless to say the least. My question is, What autoimmune disorders, if any, won't show up on blood tests? A few doctors have said to me before that I have many symptoms indicative of lupus. I have also read that many people that are diagnosed with lupus have gone years and years of getting multiple opinions from doctors because, their blood tests came back clean, yet the symptoms were persistent. Any help or insight would be greatly appreciated.

 
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Old 08-30-2011, 03:28 AM   #2
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

hi... you didn't mention if you had the ANA blood test. if it is positive then you might have an autoimmune disease. this test will have a titer too and a pattern, if the titer>1/80 then the possibility is greater. the pattern gives the doc a clue about what kind of autoimmune disease you have or will have in the future. be patient because arthritis is difficult to diagnose. it happened to me i; have a positive ANA with 1/320 titer, nuclear dot pattern, a high ESR and medium to severe joints pain. no other abnormal tests results. after visiting 5 docs i was told i have lupus and now i'm on plaquenil. be couraged and keep in touch

 
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Old 08-30-2011, 10:41 AM   #3
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

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Originally Posted by LeaBeans View Post
ok so, i've been to just about every specialist there is and, pretty much am about to give up on figuring out what's wrong with me. My symptoms are endless and yet all i've seemed to get a diagnosis for is poly cystic ovary syndrome, and GERD(Acid Reflux). The last specialist I saw was an immunologist who said there are "so many things I could have" but, I may never know because, not everything will show up on blood tests. One thing is for sure she said "There's no doubt in my mind you have at least one if not more things wrong". My last blood tests came back with my complement total high and a few other benign discrepancies that my doctor wrote off as nothing significant. I just want to feel healthy. This quest to find out what's going on with me as left me feeling pretty hopeless to say the least. My question is, What autoimmune disorders, if any, won't show up on blood tests? A few doctors have said to me before that I have many symptoms indicative of lupus. I have also read that many people that are diagnosed with lupus have gone years and years of getting multiple opinions from doctors because, their blood tests came back clean, yet the symptoms were persistent. Any help or insight would be greatly appreciated.
Yes, Lupus, scleroderma and such can be ANA negative, if that is the blood test to which you are referring, but you can still have the disease. Please note that I am just a patient and your Dr is the best resource. I know that PCOS is a very complex thing to treat and how is that working for you? Has your treatments made you feel any better or is it going to take time for them to work? The Lupus Board has some very nice stickies posted with info that might be helpfull, in the mean time

 
Old 08-30-2011, 11:45 PM   #4
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

I am going through the same thing and I just had a bunch of blood work done.. I dont have an answer for you but just wanted to tell you that you werent alone... Good luck

 
Old 08-31-2011, 07:59 AM   #5
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

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Yes, Lupus, scleroderma and such can be ANA negative, if that is the blood test to which you are referring, but you can still have the disease. Please note that I am just a patient and your Dr is the best resource. I know that PCOS is a very complex thing to treat and how is that working for you? Has your treatments made you feel any better or is it going to take time for them to work? The Lupus Board has some very nice stickies posted with info that might be helpfull, in the mean time

Thank You for your response! Yes, I know I have checked out the Lupus website and other informative websites as well regarding that auto immune disease. I really do have so many symptoms of Lupus it's actually scary. My friend who has been diagnosed with Lupus said he thinks I have more symptoms than he even does. I just read so many stories on so many different forums of people not getting a diagnosis for something for years and years. I don't want to be one of those people that suffers for years because, my doctors are incompetent.

 
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Old 08-31-2011, 08:02 AM   #6
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

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I am going through the same thing and I just had a bunch of blood work done.. I dont have an answer for you but just wanted to tell you that you werent alone... Good luck
Thanks for your reply. Let me know how your blood work came back. I feel like I may as well just go to med-school cause I know so much about health topics now..There are over a 100 autoimmune disorders. I'm sure one day they will figure out that blood tests aren't the most effective way to diagnose what people have and will hopefully have a better and more effective alternative. Good Luck.

 
Old 08-31-2011, 10:36 AM   #7
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

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Originally Posted by LeaBeans View Post
Thank You for your response! Yes, I know I have checked out the Lupus website and other informative websites as well regarding that auto immune disease. I really do have so many symptoms of Lupus it's actually scary. My friend who has been diagnosed with Lupus said he thinks I have more symptoms than he even does. I just read so many stories on so many different forums of people not getting a diagnosis for something for years and years. I don't want to be one of those people that suffers for years because, my doctors are incompetent.
Believe me, I know where you are coming from. I was told it was all in my head more than once. So good luck and I hope that you get someone to at least treat your symptoms, regardless of what they want to call it!

 
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Old 09-01-2011, 05:45 AM   #8
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

i've started plaquenil 200mg (twice a day) 3 weeks ago, my doc said i won't feel the difference except after 3 months.. i'm using zaldiar (analgesic) but the pain won't go away.
i have a question for you... do you have allergy or sinusitis? i had both and 6 weeks ago i had an ear infection and it was blocked for about a month, now it is partially open but i have a ringing sound in my ear all the time. the ENT said it might or might not go, but i read that there is something called autoimmune inner ear disease.. do you have any info. if someone out there have this problem please give me some data... thanks

 
Old 09-06-2011, 07:09 PM   #9
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

I actually do have chronic sinusitis or rhinitis whatever it is called. I was diagnosed about 4 years ago. I also have a deviated septum so I am always with a partially stuffy nose. I'm not to sure about autoimmune inner-ear disease but, I did see that as a potential target with Lupus. Lupus is an autoimmune disease that can cause problems for multiple organs and one of the potential areas that may become problematic has to do with the inner-ear. If you go to the Lupus website it will have more info on it.

 
Old 09-07-2011, 12:31 AM   #10
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

thanks LeaBeans... keep in touch

 
Old 10-28-2011, 08:23 AM   #11
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

I finally got a diagnosis of Lupus, which the dr wants me to start on Plaquenil and Prednisone in a few weks. My dermatologist and immunologist have both be conversing with each other on what the best course of action for me is. They have decided they want me to seek a third opinion that can discuss options with them so after my surgery on Tuesday, I will have time to recover then have to see a Rheumatologist soon after. How has the Plaquenil been making you feel? I heard it causes many vision problems which is why my dr.s are also hesitant to put me on it because, I already have neurological symptoms going on, on top of all the other symptoms I have. Anyway, keep in touch!

 
Old 10-28-2011, 10:01 AM   #12
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

Actually, it is quite rare for plaquenil to cause eye problems and you will more than likely be advised to have eye check ups every so often should you take this medicine. I do not have lupus but another AI and have been on it for years. It takes a longish while to become effective but has really made a difference in me feeling better and having more energy.

 
Old 10-29-2011, 01:29 AM   #13
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

I feel for you about this and wish they will be able to figure it out for you. I went through stomache and intestinal problems since I was borne a premie. but, it kept getting worse, and then I had to have a reconstructive surgery on my stomache that was done Sept. 22nd of this year via Laprascopic surgery to correct not only the GERD problem, but the stomache's vomiting and regurgitation that a surgically implanted transmitter into my esaphogus and worn monitor showed was happening 100 times per day, daily. The surgery worked to correct this porblem for the ost part by fixing the hietal hernia and taking the top part of my stomache and wrapping it around my esophagus to force the flap to work so that the regurgitation and vomiting would stop happening so I could keep food down. But, it did not correct the cessation of digestion that was happening and is still happening of my stomache and intestines ceasing their proper digestive processes. And, now, I've found that my severe GERD and other problem have returned all over, again. And they had long ago checked for Scleraderma (I ow live in FL, but before I'd moved back to FL, I had lived in MO, and the doctors, there, did ANA testing, but didn't find anything that they thought would show Scleraderma. And the doctors in the hospital said that yes, Scleraderma can happen and not show up in the bloodwork, but that the head doctor even said that it happens so rarely tht he takes those patients out to dinner as a treat if they find patients who have Scleraderma but don't show it in the blood work. I then said to him, "Then, if it doesn't show in the blood work, but the patients show symptoms of it, how will you all diagnose it when you even said that my symptoms are of this, and yet you dismiss Scleraderma if test results don't show it?" He said that I probably don't have it if it doesn't show up in the blood work. but, I have tumours (most are benign) and lesions on my liver and elsewhere, yet I don't drink alchohol, Ulcers of bladder and stomache, along with tumours in stomache, Barrett's esophageal, the lesions and some tumours are of the cells that weren't extra cells that changed and formed-they were of already formed cells that changed in the same way that Schleraderma changes cells of organs (they had me read on it when they thought I had this. They then dismissed the idea of Schleraderma when it didn't show in the blood work). I did have times when the monocytes would be too low, and then other times in my life, too high, even when it appeared I wasn't too sick, that I didn't have a cold, infection, nor the flu. But cus I appeared/looked healthy, some of the time, and cus I was ok of my white cell count in some ways and some of the time, they dismissed it. But, The doctors at least listened when I'd started losing weight. I now weigh in the 90's, despite the fundication stomache reconstructive surgery. I continue to lose weight, and am about 96 or 95lbs, at this point, and as an adult, I'd never weighed that. I lost over 20 lbs, and continue to lose weight. The surgeon and doctors don't know why that third cause but had told me before surgery about that the surgery would only help my stomache to keep the food down, but that it would not help stop the cessation of digestion problem, and that it only might buy me time for them to figure out why the cessation of digestion so that they could then stop it from happening. by the way, I have multiple ulcers of the stomache that aren't healing. but taking the medications to help my stomache healing from that isn't helping. I don't know why. But, I had dreamt of these issue since I was in my 20's in age (I am 35yrs of age, now). They surgery didn't stop the cessation of my digestive system, and I am wondering if they will be able to find the cause in time before I go underweight and have more serious complications and eventually die from digestive cessation. much of the time, I cannot eat, anymore, and have taken to trying to see if my body can allow a piece of wheat bread (cus it crumbles, it can be easier for the stomache to digest, I've found, than white break or some other carbohydrates. The surgeon's nurse said that same thing to me about that just the other day). Anyway, I've taken to seeing if my body will allow that, cus, at this point, my body isn't even accepting that, anymore, too easily, and tries to bring that back up. And I've taken to eating almond butter cus it is all natural and soft. I have some luck with that, if in a small amount, and with soft meats like really soft and cooked down in water to make it really soft. but, sometimes, I cannot even eat a sustainable amount of that or of anything to keep my body going, well. And I find I am just tired and craving vitamins and all types of foods cus I can barely eat, yet my body needs more than I am intaking. do you find that you also are having this same problem with your digestive system, as well (of cessation of digestive processes)? I have an appt set up with the rheumatologist on Nov. 7th. I will go there and see if he can figure this all out. Hope you can get your situation all figured out. I sincerely do. Also, I need support, myself, about this situation i am in that is similar, cus it is difficult going though this. Doe anyone have any information on this is what I am going through and if any autoimmune problems could be causing my digestive processes to cease, or any info on why digestive processes cease? Any info could be helpful cus I could then take that info and ask my doctors and surgeon about it.

 
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Old 11-01-2011, 07:37 AM   #14
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

Wow, I'm sorry to hear you're going through all that. I can't even imagine. Makes my issues sound mundane. Have they ever checked for Crohn's Disease? I knew someone that had a bad case of it. She couldn't keep anything down and everything she did eat went through her. I had digestive problems with keeping things down for a while but, like alot of my symptoms it goes through waves of me feeling horrible in one area of the body (i.e. stomach) to the next day horrible joint pain and fatigue. The newest is Kidney pain that I've been experiencing so I went for a CT scan of the kidneys yesterday. alot of Dr.s won't diagnose certain things also cause, they don't want to get sued if god forbid you were put on a medicine for a specific diagnosis and you didn't reall have it. It's ridiculous and I hope someone helps you soon. But, If I were you I'd ask for a script to be put into tertiary care at Mayo Clinic or John Hopkins. Somewhere they specialize in Gastroenterology. Good luck with everything! I'll keep my fingers crossed for you.

 
Old 11-01-2011, 11:00 AM   #15
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Re: Can An Autoimmune Disorder Not Be Detected By BloodWork

AprilMorone, I am sorry you have so much on your plate to deal with! Not everyone who has scleroderma shows an elevated ANA when first diagnosed. Not everyone who has it gets hard skin either. Do you have Raynaud's? I would mention that you were tested for scleroderma at one point and ask your new Dr. his thoughts on that. I would ask about your SED rate - it measures inflammation. Plus, I would write all your questions down on paper for the Dr. If you were given a diet to follow after your surgeries, I would bring a copy of that too, just in case. I would ask about symptom relief (and have a written down list of them) rather than a name of a specific disease at first because diagnostics may take some time and it may or may not be autoimmune - but that's just my thought processes. Take care and let us know how it went.

 
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