Blood Tests & Diagnosis

@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!

Thank you soooooo much for the detailed response. I have looked into all of the tests/labs/etc. you've talked about and I appreciate your recommendations. I will be exploring them further with my provider.

I'm fine with providers who can will be honest with me a say "I think there's something going on. I'm not the right provider, but I think you should pursue it further." But usually, I get the "you're too complex to treat," "the labs are fine and there's nothing we can do," and "you need to lose weight or see a therapist because it's all in your head." I know providers can't always give a diagnosis but unfortunately, I've only had one provider who really believed there is something going on and she left the practice.

I do plan on moving forward with an appointment at the Mayo Clinic in Minneapolis. My job is currently doing open enrollment for insurance, HSA, FSA, etc. I'm going to see what I need for a Mayo Clinic, what will be covered, if I can qualify for the financial help, and put as much money as I can into a HSA or FSA account to help with this process.

I am completely sympathetic to your frustration.i have had more doctors tell me those things than good ones who take the time to listen and I am still in limbo...almost a decade later. Good luck. And I hope you find the answers you need.

Thank you soooooo much for the detailed response. I have looked into all of the tests/labs/etc. you've talked about and I appreciate your recommendations. I will be exploring them further with my provider.

I'm fine with providers who can will be honest with me a say "I think there's something going on. I'm not the right provider, but I think you should pursue it further." But usually, I get the "you're too complex to treat," "the labs are fine and there's nothing we can do," and "you need to lose weight or see a therapist because it's all in your head." I know providers can't always give a diagnosis but unfortunately, I've only had one provider who really believed there is something going on and she left the practice.

I do plan on moving forward with an appointment at the Mayo Clinic in Minneapolis. My job is currently doing open enrollment for insurance, HSA, FSA, etc. I'm going to see what I need for a Mayo Clinic, what will be covered, if I can qualify for the financial help, and put as much money as I can into a HSA or FSA account to help with this process.

When I got medicare I had planned to get a supplement (medgap). It's very expensive but I have not had one bill, nothing. It goes up $10 monthly every year. It is now $221 a month, and with medicare and part D, which is the highest plan all total about $440 a month. I had double compound fracture surgery, I paid nothing. No deductibles, no copay, no 20% on tests, I have had mri's, my cancer labs are very high, and I can see any Dr anywhere. Before medicare i was paying about $100 a month the clinic let me carry. I would put off going to Dr because I couldn't afford it.They have all kinds of plans, I have plan F, but others that are less. My part D is almost $90 a month and only one copay, the rest are free. I got one relative to switch, he had to pay hospital $8,000 because of advantage plan. If you are in this age look into it, you get regular medicare, then this. I had older relatives that have this.

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

So an update: on Monday, I went to the emergency room because my heart rate was fluctuating between 110 and 140 when sitting, standing, and walking. I checked my Fitbit and my heart rate seems to go from my resting (when asleep) instantly to the 100s range. I was having chest pain, difficulty breathing, and dizziness.This was similar to an episode I had on Saturday and felt I needed to get it figured out. I spent 5 hours in the ER but all the tests came back fine (even though I fell after I got a CT scan done). My ER doctor confirmed that all my tests were fine but agreed that something is clearly wrong and that the cardiologist wants to perform some outpatient tests. I was prescribed a new medication to lower my heart rate in the meantime. I reached out to my general practitioner and asked for a referral to an immunologist and another gastroenterologist since issues have returned. She submitted the referrals immediately and both specialists have actually spent time at the Mayo Clinic and consult regularly/submit referrals if needed. I'm feeling like I'm finally getting somewhere!