Back to square one

A Gentleman And His Sheep In the Rain by Todd Sullivan

A Gentleman And His Sheep In the Rain by Todd Sullivan

Yesterday was the long awaited appointment for the possibility of a diagnosis related to my daughter’s joint hyper mobility and the other symptoms that “seem” to come along with it. It took us 8 hours to drive there because of bad weather. By the time we settled in at the hotel, she was so exhausted and sore from the drive that I had to fill her with Advil and Tylenol. Plus she had some sort of virus and has a lymph node the size of a golf ball on the right side of her neck.

I thought for sure the appointment would get us somewhere – at least I was hoping it would. I know I’m not crazy and I’m not making all of this up. She is hyper mobile – and according to the NCBI diagnosis criteria, it looks like she has EDS type III. Reading an expert’s content for physicians, Typical features of the Ehlers-Danlos Syndrome Hypermobile type (EDS – III), the condition is also most likely.

I have to admit I had a certain amount of doubt regarding the appointment as I know EDS is not well understood among doctors – unfortunately, I was right.

We were told this: 1) She doesn’t have EDS (for sure) because she has no heart defect and her skin is not stretchy on her chest area; 2) She needs to go back to school; 3) She doesn’t need physiotherapy; 4)  Some people are just like that (about pain); 5) It’s a very good thing – she can go right ahead and exercise without risk of hurting her joints as there is no danger, full blown exercise but she won’t be able to run – ever; 6) She needs to do yoga.

Are you kidding me? No, more like “Are you f***g kidding me!?”

1) People with EDS type III or JHS don’t necessarily (probably rarely) have heart defects nor  do they necessarily have stretchy skin;

2) She is brilliant and is not in school because she can’t walk or sit for any f***g amount of time (is that clear???). Plus she can’t hold a pencil anymore because her fingers hurt too much.

3) Physiotherapy is changing her life – it is giving her confidence and helping her reinforce her back muscles and ligaments which she doesn’t know how to handle on her own (Is this is bad for her?);

4) Pain? Except for people coming out of the OR or with severe orthopedic injury, I have never seen anyone with that kind of chronic persistent pain. What are you saying???

5) She can exercise without hurting her joints? She can’t move or do anything without feeling excruciating pain afterwards.

6) We’ve tried yoga when she was hospitalized – that’s way back when she was able to walk yet she couldn’t put up with an adapted yoga session.

This doctor is suppose to send “recommendations” to our family doctor.

So then what? Is this fibromyalgia (she scores 18/18) with hyper mobility (I think it’s rather rare and most of these patients are thought to be EDS patients)?

So we are back to square one.


20 thoughts on “Back to square one

  1. As I read I wondered over and over, what do the doctors say when you question their conclusions? Are they defensive? Or does their explanation make any sense, is there any logic in their thinking? Are they defensive because you know more than they know about EDS? Are they logical in their diagnosis conclusion? Or is their thinking non-sensical, as if they are just saying the obvious to be done? I can’t imagine what it feels like to be ignored and denied time after time. I simply can’t. It does make me think about stories of several women I have heard about who took f-o-r-e-v-e-r in getting a Lyme disease diagnosis. Stories of doctors ignoring their symtptoms and treating them as if they are just making it up for attention. My wish for you and your daughter is that you find a doctor that can get you the diagnosis and help she clearly needs and with that diagnosis will finally come a peace of mind you desperately need. All my best, Charlotte 🙂

  2. It’s getting to a point where I’m very quiet in any doctor’s office – except of course with our family doctor who is amazing. They become defensive and even intimidating at times. This last one for example (although he was kind and soft spoken), when he asked about school and I told him she was gifted, he asked for the “specific names” of the tests (was I making that up??). When he told me she didn’t need physio – it was condescending to physiotherapy itself – and I knew he knew what he had just said didn’t make sense. I was so disappointed and I said at one point before leaving “I don’t understand how she could have been so good at everything – physical and all – and then become so tired and unable to move and in such pain. And he was avoiding my gaze or so it seemed.

    I’m at a point where I’m thinking I need to take steps to change something at the Canadian level – perhaps I need to call relevant medical professional associations and ask about EDS guidelines for Canadians – which guidelines are used?? Where can they be accessed??Why aren’t there any?? I’m a medical writer and can take legitimate steps in that regard as I have the credentials to do so. I don’t know – maybe I should do this instead of wasting my time and energy and feeling like i’m out of breath every time my daughter has to live such a situation over and over again. It’s terrible.

    On another note, lately my daughter seems to be a little better with walking, standing, and sitting. She cannot walk much further, but she appears a little more tolerant. I think her autonomous nervous system may be maturing – and our doctor thinks so as well – so we’re crossing our fingers as things may get a little better.

    And thank you for your kind words as always. 🙂

  3. Just because exercising won’t damage her joints, it doesn’t mean that it doesn’t hurt to use them. We have the same issues in workers’ compensation law. The expert doctor for the defense testifies that it won’t hurt the plaintiff’s shoulder to use it, and the plaintiff can work without restrictions because work will not damage the shoulder. It’s a type of lie, really. It’s asking the wrong question. A functional capacity examination can reveal the real effect on the activities of daily living. I once had a neurologist tell me that no matter how much treatment, testing, and programs we had our daughter take part in, we were wasting our money and it wouldn’t help. He suggested we buy a good used car instead. Looking back, I think he was depressed, and felt helpless. He didn’t really know what to do; and had nothing to offer us.

    • “Looking back, I think he was depressed, and felt helpless. He didn’t really know what to do; and had nothing to offer us.” You have to wonder when someone is so disconnected what may really be going on – I so agree with what you just said. Thank you for that. At this very moment, I am also telling myself that I need to write a letter to state that I don’t agree with his recommendations and interpretation of her condition. We may not have guidelines in Canada, but there are some in the US. Perhaps I should add a copy and underline where he tried to mislead us and where my daughter fits into the diagnostic criteria.

  4. Blowing up your blog tonight–forgot to read your latest post. Wtf on #1. I have Type II and am not that stretchy (hence, not having Type I), and it’s not specified anywhere that it’s on the chest! Was he referring to the venous pattern seen (usually) on the chest and abdomen in Type IV?? I had to get the DNA test due to the venous pattern I have nearly everywhere. Regarding the heart issues, they are usually benign and are NOT even in the diagnostic criteria (major or minor). I have MVP that now is deciding to become symptomatic, but it just helped in the Dx–nothing more.

    I like your idea about writing to the government. I wish they would adopt the US guidelines, but it never seems to work that way! It’s like with my corneal surgery that I had to pay big bucks for due to it being a trial. Why doesn’t the FDA just take all the research from the EU, where this has been done for a while and was developed, and then approve it based on that? Idiots! Oh, I’m just seething about how deplorable that doctor was you saw. I drove to LA for my “misdiagnosis” yrs ago, got nowhere, and cried the whole drive back (not a big crier here!).

    I’m sure you’ve read this article via the NIH (written by a doctor at Johns Hopkins–where I’d send you guys if I had any money!!):

    So sorry again, 😦

  5. Yes, that’s the article that was written for the guidelines in the US I believe. We have to pay for copy of the guidelines (which I think is retarded) but that article or document is a summary – so it’s fine. Have printed it, will underline the points that relate to her and sent it I think! My comments are overlapping. 🙂

    Have a good day-night!!!

    • I know. I wondered for a while afterwards if I wasn’t making everything up. It’s hard to keep up with this challenge – because really, that’s all it is. Strange how educated people can be so uneducated isn’t it?

      • Yes, and defensive about where they are ignorant. You’ll rally. But for now, it’s ok to feel how you feel. I don’t mean that like I’m giving you permission, just urging you to give yourself permission to feel bad and know you’ll get your strength back to keep fighting.

    • Oh, thanks so much! What you write touches me, too. I need to read real stuff and stay away from those who hide their true thoughts and feelings. Drives me crazy! It took me years to start blogging and it was someone who would get forwards of my wacky e-mails who kept telling me to do it. I always say, “If I’m not laughing, I’m crying.” My father is very funny and I got my humor from him (or just my ethnicity in general!). 🙂

      • Take your time. It took me 7 mos and lots of thinking about it to disclose my ethnicity! I’m also starting to feel like I have to add a disclaimer to everything (have a draft going while I write this) due to humorous things I say coming across as insensitive. Whatever… Go with your gut! 🙂

  6. Thanks for the follow (or did you click the box by mistake… Lol)! I just broke my rule, but we comment more than we post–ha ha. Hey, I got 4 written this month–personal record and need to go back to 3. Following you, too (really needed to anyway)… 🙂

    • I noticed yesterday you weren’t on my list of blogs I follow – odd. Anyway, I only truly follow a few people (3 blogs) – were I want to read every one of their posts. A blog has to bring me a certain amount of knowledge… and other things of course! 😉

      • Aw, so appreciate it. Same here. I followed people who followed me when I was a novice 7 mos ago (lol) and got rid of them (love how they don’t really follow you) and then found my group. The best is I have some wacko, Anti-Semite following me! Obviously not really reading my posts! Ha ha. I tend to wander when bored and comment on random blogs and then get overwhelmed when they comments back! It’s due to the EDS, achy body and the vision/blinding screen. So, I said, “No more follows!” and just have about 10 blogs bookmarked, but you and I talk so much, why not? I get the same feeling from you blog, too. Most of my bookmarked people only have a section on EDS or KC (apparently I have no hobbies) so don’t want every post in my inbox! 🙂

  7. Hey you. Was just thinking about you and thought I would say hi and ask how you are doing.


    How are you doing???

    • Hey! I’m sorry I’m being so quiet. Sometimes I feel so overwhelmed it feels like I can’t catch up with me. I’m simply “divided”. But I do drop by and read or at least try to follow my favorite blogs. 🙂

      Summer is coming although we’ve had all this snow these last few days. Maybe that will help. 🙂

      • No need to apologize. Just wanted to know you were thought about and hope you and your daughter are okay. Summer and shorts will soon be there. Hang on!!! 🙂

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