these are not the results you are looking for…

obi wan memeBy the title of this post I do not mean to suggest I received bad news in the form of test results. I was really just looking for an excuse to make a Star Wars reference.

The results from my mast cell activation disorder (MCAD) test are in. The results actually came in a couple weeks go, but I have been too tired to post them. You may remember that this is the test for which I had to carry around a big jug of pee for 24 hours. A big cold jug of pee.

All of the results are normal, except that apparently I urinate quite a bit more than the average person. For some odd reason, I take that as a compliment. I may not be good at a lot of things, but I’m excellent at going to the bathroom.

The urinalysis consisted of the following tests:

  • Creatinine
  • N-Methylhistamine
  • Leukotriene

All results were normal – nothing even close to borderline high. So, it looks like I don’t have MCAD. I have to admit, I’m very surprised by the results. With the flushing, sneezing, and rashes, I thought MCAD was a possibility, but I guess I just have bad allergies.

This is the contradiction of the sick: we fear positive test results, but hope for an explanation to our misery. I was simultaneously relieved and heartbroken when I tested positive for POTS.  It sounds ridiculous to say I was hoping the MCAD test would be positive.  No one ever wants an illness, and to say that I do undermines all of the hardships MCAD inflicts on the lives of those who have it. But I do want to know what caused my postural orthostatic tachycardia syndrome (POTS). I want a justification, and an end to the arduous search.

I believe POTS is caused by something – I don’t understand how my autonomic nervous system can just stop functioning correctly one day. There are others, including my POTS doctor, that disagree and don’t think POTS must have a cause. It has become clear that, while my POTS may improve over the years, it will never be resolved until I treat the underlying issue, whatever that is.

MCAD isn’t the cause, so I will continue searching. Some possible causes of POTS include:

  • Ehlers-Danlos Syndrome
  • MCAD
  • surgery
  • pregnancy
  • accident or other trauma
  • virus
  • autoimmune disease
    • lupus
    • Sjogrens
    • Autonomic Ganglionopathy
  • Amyloidosis
  • Chiari Malformation
  • Deconditioning
  • Diabetes and pre-diabetes
  • Infections
    • Mononucleosis,
    • Epstein Barr Virus,
    • Lyme Disease
  • Multiple Sclerosis
  • Mitochondrial Diseases
  • Toxicity from alcoholism, chemotherapy and heavy metal poisoning.
  • Vaccinations

After being diagnosed with POTS for over 4 years, I have only been able to cross a few possible causes off the list, but I have finally reached a point where I want need to know why I have it. Thus begins the journey to discover the cause of my POTS. I expect it will be a long and expensive one.  As my doctor doesn’t necessarily think there is a cause, I will be searching alone.   But hopefully the rewards will be great.

“What we seek is some kind of compensation for what we put up with.”  – Haruki Murakami

Readers: Have you found the cause of whatever illness you have? How long did it take?

Smell ya later.
– Linds

26 Replies to “these are not the results you are looking for…”

  1. Are u sure u don’t mcAd but mast cell activation… They are technically different… Just something for you to think about. Also, did u see a allergist immunologist? Because they do not really know… U need a mast cell specialist to be honest. Do u see Dr. Ahern? He is part of Scripps in La Jolla… My daughter saw two different allergist… And both missed it. There was a cool webinar on Mast cell.
    I never know if u get my responses– cuz u don’t answer… U do y hve to, I totally get it… Not well/ tired…

    1. Hi jennifer, I did get your comment. I try to respond to all comments, so I apologize if I missed one in the past. I do see Dr. Ahern. He told me about Dr. White who did my mast cell urine test. Dr. White recently wrote an article about MCAD and POTS, so he’s pretty knowledgeable about both. Doest your daughter have mast cell activation?

      1. Are u sure u don’t mcAd but mast cell activation… They are technically different… Just something for you to think about. Also, did u see a allergist immunologist? Because they do not really know… U need a mast cell specialist to be honest. Do u see Dr. Ahern? He is part of Scripps in La Jolla… My daughter saw two different allergist… And both missed it. There was a cool webinar on Mast cell.
        I never know if u get my responses– cuz u don’t answer… U do y hve to, I totally get it… Not well/ tired…

      2. It is probably me… I am not tech savvy and thought it would come as an email to me… But I guess it doesn’t and I just stumbled across your response… Lol so u probably have responded… And u didn’t know.., lol and no need to apologize…especially when it is probably my lameness..,
        Well, I would trust them then! Yes, daughter who has POTS has mast cell.., they Are starting to call it that now from what I understood on a webinar.., and I was only told mast cell from her pediatrician from Ahern.
        My other daughter has POTS and I believe it was caused by concussions.., and that was two years ago and she was only recently diagnosed in March.., she has tremendous fatigue… I didn’t know this existed u stl September… Otherwise I wouldn’t gave recognized these symptims in my daughter.., can be caused by surgery or any trauma in ur life..,

      3. no problem! i think there is a box you have to check if you want to be notified of a response by email. i’m glad you can see my response, as i appreciate everytime someone leaves a comment and do my best to respond.

        the webinar sounds interesting – do you know where you found it online? i’ll try to search for it.

        is your daughter with mast cell being treated for it? if so, has treating the mast cell also helped her POTS?

  2. Lynds I hate to add to your list, but here’s one that WAS my problem.

    Diabetes Insipidus. Takes a few tests–anti diuretic hormone levels–osmolity of both blood and urine–and basic bloodwork for dehydration when at your sickest. The good news is a bit of ddavp (a nonnarcotic anti diuretic) stops the over urination and allows restored normal hydration and normal levels of blood and fluids in the body that can contribute to POTS.

    I went here because you “urinate well.” Maybe too well? took me years to find this out–a simple pill stopped 75% of my fainting spells and tons of other symptoms too odd to believe–unless you have them too. Sounds like you do. My gp says,” I’m sorry you were so sick for so long–but ya know this is NOT the first place we look. ” I said, maybe next time it should be?

    Hope it helps.

    1. Thank you for letting me know! It sounds like it’s at least worth looking into. I’ll add it to the list.

      1. I KNOW how it feels to have ANYONE suggest ANOTHER drug since they ALL do weirdness to us. But ddavp “desmopressin acetate” is given to children bedwetting–is very safe and ONLy stops over urination from water diabetes. All the tests I listed ate blood tests–takes one stick and a few tubes drawn to know. Hope it helps!

  3. I’m so shocked your mcad results have come back negative! Like you I was convinced something would show up. It’s great that all is fine, but OTOH must be so frustrating to have all these symptoms and still not know the cause 🙁

    1. it is frustrating! i’m just so surprised, especially because i do well on the H1, H2 blockers and cromolyn. in fact, if it wasn’t for cromolyn, i probably would never eat. i’m nauseous and never hungry without it. thank god my dr. said to continue taking them even without the MCAD diagnosis.

      1. My histmaine was also normal, although very high end normal. I don’t have the money to have any other mediators checked, but my consultant still said I’m classic MCAD.

        As Antonia says, there are an estimated 30 mediators and we only test for between 4 and 6. If you have MCAD symptoms, and respond to antihistamines and mast cell stabilizers, my Consultant still says MCAD is likely x

  4. Hey Linds, interestingly enough mine also came back negative but my allergist and Dr Goodman at Mayo said that there are so many mediators that they don’t have tests for all of them. Funny thing is I’ve never had problems with rashes until recently and when I get bitten by a mosquito I get huge welts. I would think this could possibly be the same case with yourself. Unfortunately my daughter was also diagnosed earlier this year, but I’ve had to be an advocate for her to get all the right testing done. It’s not been an easy process, but my own search for answers had helped get to the bottom of her problems a lot faster

    1. that’s very interesting that they don’t have tests for all the mediators. my POTS dr. (who is NOT a MCAD specialist) seems to think its possible i still have some kind of exaggerated histamine response going on, since i do well on the H1 and H2 blockers and cromolyn and i react to some high-histamine foods. i haven’t met with the MCAD specialist since i received my results, so it will be interesting to see what he says.

      good for you for advocating for your daughter! i know how difficult it can be to get doctors to listen sometimes. it’s amazing how many mother/daughter pairs seem to have some of these illnesses. are you the only two in your family that have it?

      1. Yes, so far just the two of us. On top of the POTS and mast cell disorder, she also has a joint hyper mobility disorder. Not sure if it’s Ehler Danlos, but they said it wasn’t worth testing for it because there’s no cure anyhow. I sometimes wonder if there’s still something else underlying with myself because we have a lot of family members with autoimmune disorders .

  5. Your doctor doesn’t think there is a cause? I cannot wrap my head around that.

    1. i suppose he thinks that there is a cause, but doesn’t think we’ll ever know what it is.

      which really isn’t any better than not thinking there is a cause. if we had exhausted all likely options, then it might be understandable (i’m sure there are some people with POTS that never find their cause), but to not even look…that’s very frustrating.

      1. I agree. It seems like sometimes they aren’t sure what causes to eliminate or how to go about eliminating them.

        I had lost hope of identifying my root causes until my cardiac electrophysiologist said, “You have fevers several times a week. That is something.” I resisted and recounted how many doctors I’d seen. He said, “You should give figuring that out another try. You have more information now” (I wasn’t diagnosed with Dysautonomia or EDS before). He suggested I find an infectious disease doctor and the only one he knew was pediatric, so I found one independently. She was absolutely HORRIBLE, but his statement relit the fire under my butt and bolstered my certainty that something is wrong that they aren’t seeing.

        Prior to that, I would bring up ideas but if the doctor didn’t know what to do with them or they turned out wrong, I wouldn’t push much further. His one sentence of encouragement got me to put together more research and do it better than I used to and the research got me to where I am now…. which isn’t any better and things are still a bit unclear, but at least I have a better picture of my illness.

        Don’t give up!! It took 6.5 years and who knows how many doctors (100 may not be an unreasonable number) to find my autoimmune disease from when I first began getting fevers.

  6. I’ve been dealing with dysautonomia for 20 years… I’m essentially housebound now. It’s really hard to not know why something happens. I was diagnosed about a year after I was diagnosed with diabetes- which seems like it was too soon to be the cause, but nobody ever really knows how long they have diabetes before diagnosis; I had symptoms- I just blew them off. Then came chemo, which makes autonomic disorders worse. I have some probable causes- but even knowing what those probabilities are doesn’t help anything as far as day to day functioning. My blood sugars are under control now, and yet I am deteriorating.

    I had a ton of tests done when I was getting diagonosed… everything from MS and myasthenia gravis to pheochromocytoma, etc. Pee jugs, spinal taps, tilt table, heart tests- the whole gamut. And while it was good to not have those disorders, the tilt table test clinched it. I bombed that one.

    There have been times when I’ve been very frustrated at not knowing ‘why’… but in the end, it doesn’t change the symptoms. If I get overheated, I pass out. If I end up in too much pain (easy with chronic pain and a deteriorating spine), my heart rate goes nuts, and I can end up passing out. If I stand too much, my heart rate gets crazy. If I’m startled (even by a TV show), my heart rate goes nuts. The ‘why’ doesn’t matter much then- I just have to get things back to not being distressing and possibly dangerous.

    Maybe it’s because I’ve had it for so long now- and have a probable cause. But knowing the cause isn’t a guarantee that anything different can be done. Learning to adjust is going to be important whether you have a cause or not…. :/ <3

    1. thank you for your comment. i think you make a good point – even if i discover the cause of my dysautonomia, it may not really change anything. i do know some people whose POTS improved when they had their underlying condition under control, but there’s no guarantee that would happen for me, or that my underlying condition will be any more controllable than POTS.

      1. Hang in there- it does get easier to live with when you know your own personal triggers. If you can (and if it would help), a cooling vest is a huge help if you have heat intolerance. Mine is from GlacierTek- and has made leaving home for appointments and my monthly grocery shopping much better and safer.

        If you do find the cause, then I hope there is a treatment for it. Best of luck to you 🙂

  7. I’ve been diagnosed with Mast Cell Activation Syndrome. My 24hr urine included more testinf yours did. Several things would be all types of Prostaglandins, 5-HIAA. It was my prostaglandins that tipped my doctors off. My PGF2 was over 300 higher than it should’ve been.
    For me it took just some more tests that were a little more specific and doc’s looking at clinical symptoms and response to h1 & h2 blockers as well. When they pieced them all together they discovered MCAS.

  8. Hi Linds,
    I somehow missed this post! Good to hear your results but sorry to hear no clear answers for you yet again. I’ve read through the comments and it sounds as though you can still have mcad even though your tests were clear. I’ve got the same things going on as you, and find h1/h2 work for me also. Do you find you have to increase yours over time or have you stayed on the same dose? Maybe the cromolyn helps this a bit more. I’m not sure we can get that in Australia or my doctors know about it. It’s very frustrating.

    I also wanted to follow up with you about how I’m going on florinef after your horror attempt. I started on a quarter for a few weeks and then up to half. I’ve done this before and stopped it because I felt it overstimulated me (but not as bad as your reaction after the second dose from memory?). I’ve been on the florinef now (still only half a pill) Since 12th of June (so about 2.5 months). Well I think I’m going to have to stop it again. It’s making me jittery with bouts of that adrenalin feeling like I could climb up the wall.

    Last night I had allergy symptoms (itchy lungs, skin, eyes, nose, and forceful tachycardia lying down in bed going to sleep). I took and extra Zyrtec and it seemed to settle. But I think this is because of the florinef as its been increasing since I started. It’s a shame because florinef has given me extra energy and stopped the excessive peeing! Excessive peeing is common in us potsies, often caused by the adrenalin we push out rather than diabetes insipidus but I agree it’s probably worth ruling out. I’m going to stop now as I feel I’ve taken over your post!

    1. DI? I tested positive for it–as much as that can be. Test for dehydration with electrolytes–then test for high blood osmolity–low urine osmolity(sp?) showing not enough water in blood (nor blood volume) and too much water going out. The other test is to see if you have low adh (anti diuretic hormone) Mine showed 0. But the test is not sensitive–so it is possible to have a little–and some people get by with a little–and still not show you have any. Meaning there is no way to 100% diagnose–but if all of these show what they should–together they make a pretty sure diagnosis.

      Having done those pee and blood tests–and gotten the results–the next test is to try ddavp–desmopressin acetate–is an anti-diuretic to replace what you are not producing (we all produce less as we age). Is a very safe drug–far more so than steroids to be sure–given to little kids who pee the bed at night to help them train for many years.

      For me it helped in only a few days–I hold more water–have higher blood pressure that is less prone to drop when I stand– without the side effects of Florinef–and stopped having about 70% of my shocky spells on this harmless med alone. Florinef did the rest–but I have since slowly weaned off it and now get by with drinking water, salt, and ddavp most of the time. If stressed and it all comes back– then Florinef in very small multiple doses 3 per day helps–though sometimes it actually takes stronger rescue steroids like decadron for a dose or two to stop a flare up.

      My doc says the key to being well is to stay well–NO FLARE UPS. We all know what causes them–but sometimes step over the line. He also warns that getting sick will make me sicker–and each flare can be tuffer to stop than the last.

      Another thing I found–was low grade anemia. Also an aggravating factor that can be easily overlooked. Hemoplex is the med given to chemo patients for this–works fast with fewer side effects than most iron meds–and has other vitamins as well to help iron absorb best. Avail online or in most vitamin stores.

      Hope this helps someone–I was sick for years and am doing much better now.

      1. Hi Sandy, I found your post about DI interesting and helpful. I think I’ll get those osmolity tests done as my electrolytes are often under – always during a flare, same as the iron so I will look in to that too. I don’t understand the steroids for flares – can you just take florinef like that, as needed? I’ve only tolerated half a pill to date and my stomach does not cope with steroids. Thanks 🙂

  9. Cindy Hayes says: Reply

    I am so glad that I stumbled upon your blog! I am currently undergoing testing for several different health problems. Mast cell issues is one of them. I was so sure that I have something that is mast cell based. I got my preliminary blood test results today, and they are normal. I have to call tomorrow to see what my next steps should be. I totally understand the feeling of dread that comes when you are about to find out the results. It’s like damned if you do and damned of you don’t!

    1. Hi Cindy! Thanks for visiting my blog.

      Have you had the 24 hour urine test yet for mast cell? From what I have been told, that is the most reliable test. I had blood tests prior to the urine test, and they were normal, although I’m not sure if it’s the same test you had. If your doctor doesn’t mention the urine test, it might be something to bring up. Let me know how it goes!

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