Blood Tests & Diagnosis

Btw, medscape has many good articles on autoimmune disorders that go into diagnostic criteria, and that are free, if you haven't tried that yet.

Oh, and also, the reading I've done suggests that fibromyalgia is actually frequently a co-morbidity of other autoimmune disorders, including lupus. So, it's kind of ridiculous that being diagnosed with that would make any physician think you didn't also have an autoimmune disorder.

Patty, thank you for your response! I agree that it’s sounds like lupus. There have been so many things that frustrate me about this process because I’ve been searching for a diagnosis for years and am just feeling stuck. Of the typical lupus symptoms, I don’t have the seizures or oral sores (at least I don’t think because I haven’t seen pictures that would show early onset). Especially with a EBV test last year stating that I had recent exposure to the virus yet I was diagnosed with it back in 2008. The recent link of EBV to lupus and other autoimmune is something I’m trying to stress to my providers as well. You’d think that I didn’t live in a big city without lots of specialists based off these responses. I’ve been recommended to the Mayo Clinic at least 3 times in the last 4 years because it these things. Ugh. Just so frustrated.

Perhaps you could look to the "Eastern" approaches to wellnes and healing where diagnoses are less important and the focus is more on being well than on being sick. I used to have an autoimmune disease but don't anymore. I practice Qigong.

My drs say I am complicated, but never refused to help me. I tell them I am a challenge.I have spent a lifetime with problems no one can diagnose. I told dentist I that I would never get novacaine shot again. Then found out I have no pain when drilling cavities. Told a new dentist this, he got all huffy, told me he had seen 10,000 patients & all needed shots. After the 10th cavity done, he left and never saw again, he didn't show his face or apologize. Found out my sister had same thing. I still have pain in mouth, just not drilling. So you will need to look elsewhere for a dr, because yours was lazy. I had butterfly rash, all tests normal, I don't give up. Found online a test called anti-sm or anti-smith, tested positive for lupus 3 times. That was 15 yrs ago, last few yrs been negative, was told the numbers go up and down. Have had fibro since 84. A couple yrs ago went to urgent care for bladder infection. When done he says stand up. He then took his thumbs and dug really hard into my hips, I am trying to get away, and swatting him. Thought I would die, he probably thought the fibro was a fake. I called the clinic manager to complain, she was shocked. Yes still there, I am not.

@mcgke91 - I was very interested by your story because in some ways it reminded me of my own. I too have always had a seemingly weak immune system, had my gallbladder removed in 2016 at age 27 (they took my appendix at that time too because it was malrotated - i.e., in the wrong place - and they also cut off a liver lesion they found, so it was a 3-for-1 procedure). I've had kidney stones twice (the first when I was 18) and they recently discovered I have a new liver lesion. Obviously, I could go on and on, but the gist is, I understand your frustration and am sorry you're having such problems. I wish I had an easy answer, but all I can offer is more questions to consider and reassurance that you're not alone.

1. I 100% concur with previous suggestions that you should get a second opinion with another rheumatologist. You do have several symptoms that are suggestive of lupus -- particularly the butterfly rash -- and I am of the firm opinion that if you do not feel comfortable with a doctor, you should seek another opinion, even if it's only to get the same diagnosis. Case in point - I saw an endocrinologist several times who told me my endocrine system was fine, but I never believed her because she never LISTENED; I just recently had an appointment with a different endocrinologist who essentially told me the same thing, but because she actually listened and looked at my records, I feel much more comfortable and confident that her assessment is correct. For your sanity, if not your physical health, it MATTERS. The obvious caution to this is, just make sure you check yourself as to whether you "didn't like the doctor" or "didn't like the (usually lack of) diagnosis". If you're open-minded, and willing to admit/accept that what the initial doctor is possible, that's the important part.

2. You mentioned the gastroenterologist - were you tested for Celiac (either by a blood and/or biopsy)? Celiac or even gluten intolerance can cause a lot of the symptoms you mention -- rash, migraines and obviously GI issues. One thing to consider/keep an open mind about, is whether you might have multiple issues going on that might be muddying the waters and making something common or typical seem complicated. If you're really motivated, you could try doing what's called a "differential diagnosis" on yourself: Write down every symptom you have, big or small (I divided my symptoms into "Ongoing/long-term" or new too). Then, research and write down every (or as many as possible) causes for EACH symptom by itself (reason being, if you did a symptom search for "nausea" with "rash", poison ivy for example probably wouldn't come up, even though your diagnosis could end up being poison ivy AND pregnancy or something rather than a one-diagnosis-fits-all like celiac). Then, start exploring/ruling out the answer that comes up most often all the way to the least. Most of the time we/doctors look for one thing to cover everything, when it could be several instead. I think I just figured out a cause for one of my totally random and inconsequential symptoms, and while yes, having that diagnosed is very unlikely to affect my overall/big issue, A) you never know what the doctor finds while looking into it, B) that particular diagnosis may be frequently associated with another more systemic one, C) you have one more thing to cross off your list of symptoms so the picture is clearer, and D) one less symptom making you feel bad.

3. The change in symptoms in 2018 is interesting. I assume you've looked at any changes -- new medications, new home/carpeting, major stress factors, vacations/traveling, etc?

4. An immunologist is actually not a bad suggestion; autoimmune diseases tend to be more well-known, but autoINFLAMMATORY (treated by an immunologist) often comes a lot of similar problems, like the poor immune response (learn more at http://www.nomidalliance.org/learn_intro.php).

5. I would get rolling on the process of applying to Mayo even if you're not sure you want to go -- applying does not mean you're legally bound to go if you are accepted, but it does mean if/when you do decide to go you're mostly set up to do so. In my case, I hemmed and hawed and stressed over whether to apply, only to be told they weren't accepting me for an appointment (which one of the specialists who referred me is still trying to work out). You may find yourself in a similar situation, in which case you could either accept that's not your path or start the process of trying to get in. Your reaction to the news of whether you've been accepted or not (relieved/excited or reluctant/uninspired) might even help guide your decision of whether to go or not, or your experience with the application process/staff might help in a similar way.

6. A great resource for the undiagnosed: https://globalgenes.org/toolkits/becoming-an-empowered-patient-a-toolkit-for-the-undiagnosed/introduction-2/

7. It sounds basic, and "how could that cause so many problems", but have you had your vitamin leverals checked? My personal situation has drastically improved since they discovered some deficiencies and started addressing them. Do I still think there's something else going on (probably)/do I think those deficiencies have caused all my problems (no)? But at least I've addressed something to feel well enough to return to work, plus it's not another "symptom" to consider exploring.

8. If you're anything like me, you're on a multitude of different drugs/supplements and/or have been for some time. Doctors are supposed to check your other medications before subscribing new ones, but it's easily or often overlooked for a variety of reasons, or perhaps there's new information out about an interaction the doctor isn't aware of. Heck, I even remember one time as a teenager, I was having "morning sickness" so to speak for several months; by sheer happenstance, I had one of my medications filled at a different pharmacy than usual and that pharmacy's label included a warning not to take the drug with Iron, which is what I'd been doing and why I'd been throwing up. I recommend checking whether any of your drugs could be causing problems together or even individually here: https://www.drugs.com/drug_interactions.html. There were quite a few surprises for me when I looked mine up that I'll absolutely be talking to my doctor(s) about.

I hope some of this is helpful. I hope you feel better soon!

Oh, another: 9. You asked about anything else to track: I recommend Vaccinations (will be particularly important if you see an immunoogist) and Medications (it's useful to know what you've tried, whether it was helpful/any reactions, who prescribed it, dosage, schedule, etc.). Medications can be particularly important when reviewing lab results, as some can affect your results (don't be surprised if you see "This medication can cause unusual results with certain medical tests" if you look some of your medications up on the website in #8). I recommend checking https://labtestsonline.org/ prior to any testing to see if there's any medications or special requirements (fasting, timing, etc.) you should at the very least ask your doctor about.

I'm literally sitting at Mayo Clinic right now basically in the same situation, chronic everything, unexplainable illness, even had the same experience with a rheumatologist this summer. I've got fibromyalgia, 6 confirmed autoimmune diseases and the got my 15th concussion(classified as Severe Traumatic Brain Injury) in June and a whole bunch of other nightmares but for the first time I have hope and here they listen, they look at the whole picture and you get a team, yes a whole team of doctors working together to sort things out. It's not easy getting insurance to let you come but i promise it's worth it, plus if you call them enough they'll do just about anything to make you stop.

DNR

Hello @batmama, welcome to Connect. Thank you for posting and sharing about your Mayo Clinic appointment. You are in good hands and hopefully they can figure out what's going on and come up with a treatment plan that helps you.

@batmama if possible can you give us an update after your appointment?

John