BJHS and the heart

So, recently I had a heart scare. It started with palpitations that went on for hours. Then nine hours in the ER. Then weeks of follow ups with echocardiograms and something called a “nuke test” and wearing a little portable heart monitor for a day.

It’s all fun and games, kids, until someone loses a heart!

I tell you, nothing has ever scared me on the level that this did.

Turns out, I had a mild virus that caused the sac around my heart to swell, and I will be fine. But given the propensity of all BJHS sufferers to have problems with their hearts or their aortas, may I suggest a visit to your internist or a cardiologist, just to be sure?

Better safe than sorry.

In other news, my specialist (the only one in the US) is retiring. So I think I’m going to bug the University of Washington Rheumatology teaching staff to find me a hotshot (not hot, just hotshot) young doc who wants to learn a lot about a “rare” condition. I bet I could line up a few patients in the Pacific Northwest, just from this blog! Who’s with me? <battle cry ensues>

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17 Comments

  1. kim

     /  April 7, 2013

    hi rideblog! I would love to here more about this and people you found were helpful, I too live in seattle and been through some much testing without anything conclusive, everything I read about BJHS sounds like me, tired and frustrated, ready to find some answers!!!

    Reply
    • I’m working on it, Kim! The UW people were singularly unhelpful, but in good news: my new internal med doc seems really nice and interested in the topic. I’m going to talk to her, as my specialist thinks that with some education, she could do almost as much as he can. We’ll see.

      Reply
  2. Elizabeth

     /  May 20, 2013

    I am interested too! I live out on the Plateau, and the knowledge in the Seattle area has been very underwhelming. I have a diagnosis and have absolutely nowhere to go with it! Thanks!

    Reply
    • I agree, Elizabeth. I’m going to call my internist tomorrow and set up an appointment. I’ve been a bit lazy, but it’s time!

      Reply
      • Elizabeth

         /  May 24, 2013

        Someone recently mentioned MTHFR gene mutation to me. Have you heard of it? It looks like it is worth ruling it out, at least for me. It would be so nice if we could do something about this!

      • Elizabeth, I’m not sure about that. Can a test pick it up? Because I’ve used a naturopath for years, my levels of every vitamin on earth have been tested many times :).

      • Elizabeth

         /  May 28, 2013

        I don’t know a lot about it, but I know that sometimes regular blood tests don’t pick it up. The only sure way is to do a genetic test, from what I understand. If you google MTHFR, you can find more info on it. I have had a ton of tests too, and everything comes out fine. I’m going on Friday to ask about it!

  3. Gigi

     /  June 18, 2013

    Hi, bendy friend! You sound just like me (including the shoe obsession & horribly painful feet). Sounds like you’ve got Ehlers Danlos . . . . Do you know about this? There’s nothing “benign” about bhjs!

    Reply
    • Hi! I think Ehlers-Danlos is just a variation of what I have, yes. I’m not picky about the name. It stinks either way!

      Reply
  4. Trisha

     /  June 26, 2013

    Hi! I am in Everett, also have a diagnosis, with Group Health, where I seem to fall between the cracks. I’d love any info on a doc who knows about this stuff. I have a doctor with GH rheumatology who is great but referred me to sports medicine for lack of a better idea… haven’t made that appointment yet or decided if I will… Reading your blog has been a help, I appreciate it!

    Reply
  5. Rose

     /  November 13, 2013

    Hi, just wondering if you found a doctor to treat you. I’ve had problems from my hypermobility since I was a child, but had carpal tunnel surgery and ended up with horrible pain in my thumbs/ripping sensation as my thumbs go out when I use them after the surgery. X-ray shows that there are subluxations, and six months after my first surgery I cannot drive or do much of anything. I am desperate for help as I am unable to do much of anything. Thank you in advance.

    Reply
    • I haven’t, unfortunately. Right now I’m stable, so I haven’t thought much about it, but I know that day is coming. Sigh.

      Reply
  6. Erin Boyle

     /  January 14, 2014

    I’m a 14 year old student whom for an independent project is studying hypermobility and depression for EPQ (Extended Project Qualification). For my studies I have composed a survey asking for opinions to help me with my project. If possible, could you share it on you blog or with others? This goes for any conditions related to hypermobility – not just EDS but conditions such as Osteogenesis imperfecta, Lupus, downs Syndrome and many others. If you want to take a look, link is here or email me.
    https://docs.google.com/forms/d/16B488Ge19LK2eIwHydXOWs1cT8JarNLMFQufffw-524/viewform

    Thanks vey much!

    Reply
    • Erin Boyle, I filled out your survey. But there’s no way to email you. It’s not listed on the survey. I just wanted to say that it was very thorough and that your project goes well. I hope you check back here and get this message some how. =)

      Reply
      • Erin Boyle

         /  May 18, 2014

        Yes, I was connected to the blog by email. I have completed the project — may I email it to you, if you are interested?

  7. sheena zacherle

     /  August 28, 2014

    Whoop for the PNW! I see a rheumatologist for my BHJS which has after 5 years has been diagnosed as a connective tissue disorder aka autoimmune disease. I get lots of swelling in chest and pain in lymph nodes which we have discovered for some random reason that anti-lupus meds (I don’t have lupus fyi) helps! I also have to take noratryptaline at night which rapidly decreases my migraines ambien to sleep (full insomniac right here) blood pressure meds in winter to open veins to get more blood flow to hands and feet. I am extremely hypermobile with lots of pain, my spine for some reason has shaped itself completely stick straight so instaed of the s shape that absorbs shock when I move its slamming like a pogo stick….I recently stumbled upon who I call magic chuck who is a massage therapist like no other who has a family created technique who has the ability to move all the knots I have and literally pull them and he is abke to free sone of ny nerves that cause my arm pain and weakness and hip pain. I feel like anybody who has what I have or close to it feel the same frustration I do. That all of these completely random things are not random at all but are all caused by one thing and it’s a condition extremely misunderstood, not studied, and at times completely demoralizing. I am 29 and I feel like my body is just holding up and if it’s this bad now what will it be 15 years from now. I am thankful my body tolerates pain well and that my mind is just used to feeling like this that I go on everyday but what ppl don’t know is that all day everyday I hurt, or I feel like crap, that my hands and feet ache and ppl ask why are your hands purple or blue. ppl don’t understand why I can’t go on long hikes or exercise everyday bc I know I have to limit my exercise or type of exercise or I will be in agony. I want to do all these things and I look like I should be able to but reality is…..I just can’t when you have this condition it’s a frequent thought that…..I just can’t and it sucks!!!!!

    Reply
  8. Mary

     /  October 11, 2014

    Just browsed around your blog, nice resource. I also have a good deep tissue massage therapist, they are the best! My sports medicine doc is helpful, too. I am in your area, would be nice to compare notes!

    Reply

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