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rj.crow

704d

This is just a vent post. The American healthcare system has screwed me over so much that I actually went and learned how to read my own raw genetic data just so I could find an answer to why I’ve been in pain for my entire life. I found massive mutations on multiple collagen genes, which points me even further toward a connective tissue disorder being my problem. But even though I have the data and can point out the problem spots, there’s no way I can get to a genetic counselor or a specialist for hypermobility. I’m so fed up with this. I just want an answer.

Top reply
    • Tadha1982

      684d

      Well they said EVERYTHING fine AGAIN BUT HAVING a migraine nd lite dizziness. A day after my colonoscopy.

    • Tadha1982

      684d

      Well they said EVERYTHING fine AGAIN BUT HAVING a migraine nd lite dizziness. A day after my colonoscopy.

    • randochikn

      694d

      my geneticist had me get a connective tissue panel and it came up with four different unknown significance gene mutations and they didn’t even tell us what that meant! I was kind of annoyed with it. It had a vEDS variant and a spondylodysplastic one, a stickler and a hardikar variant. All are unknown significance but they didnt even say if that meant we should test our family members. Mind you, I am 17 and this was through a Childrens Hospital geneticist and they kind of shrugged off my symptoms as “Hypermobility Syndrome Disorder” even after my genetic testing.

      • randochikn

        694d

        @randochikn I also am a cystic fibrosis carrier which was just nice to know, but it causes some symptoms for me and my family (small things like a little extra mucus with allergies and after sickness, and something on our palms called aquagenic wrinkling)

    • Tadha1982

      695d

      Yes just mad cause I cant eat on the 4th of july😂😂😂

    • Tadha1982

      695d

      Sheesh I need you to look at my medical file Because like you say bloodwork dont always tell. And that what Temple hospital keeps doing to me. I have lower back pains beey bad back in March I was told it anxiety Mow here we are in JuNe same problem just my upper cheat and back area hurts. No coughing, no mucus. Just hurt as if I. Over working my muscles l. And just want answers. So now July 5th I have a colonoscopy scheduled. And I'm PETRIFIED....

      • Magpie42

        694d

        @Tadha1982 I've had 2 colonoscopys/upper scopes. If you can choose your method of clean out- go for the mirilax and gatorade prep. No cramping, nausea, just cleans you out. Do stay near the bathroom though. Sending gentle hugs.

        • Tadha1982

          684d

          @Magpie42 what was the upper like? I may need my chest checked as well.

      • rj.crow

        695d

        @Tadha1982 i have an appointment coming up on the 7th and i’m absolutely terrified to talk to my doctor. hopefully we can both get things figured out quickly

    • Magpie42

      700d

      Also, if you're finding defects in collagen genes, it's pretty likely you have eds. Science hasn't found the exact genes for hypermobile eds yet but you can be dxed using the beighton scale. Also, eds affects all body systems so if you are having GI, neuro, etc issues, list them as symptoms when you take your list to a doc.

      • rj.crow

        695d

        @Magpie42 I’m doing that pretty soon. I’m having a GI flare up now actually which is why I haven’t been replying much.

        • Magpie42

          694d

          @rj.crow my GI system is my most dysfunctional system. I do okay with most everything else but my guts are just hateful.

    • Magpie42

      700d

      Where are you located, just a general city/state. I have eds and am part of several groups, I might be able to help you find docs.

      • rj.crow

        695d

        @Magpie42 Saint Joseph MI

    • Elizalo

      704d

      Are you able to get an appointment with a rheumatologist? I have ehlers danlos syndrome and my rheumatologist partnered me with a physical therapist that specializes in isometric PT. I was fine as a kid and young adult because I was extremely athletic. After a work injury made it difficult to maintain my physical fitness I started to get a lot of joint pain. My muscles simply didn’t keep up with my joint flexibility.

      • rj.crow

        702d

        @Elizalo I’m about 99.9% sure that’s what I have. I’m just tired of fighting insurance because blood work and x-rays won’t show anything and they’re a waste of my time and money.

        • Elizalo

          700d

          @rj.crow I’m sorry it’s been so hard. My rheumatologist was the one who confirmed it. I had a neurologist diagnose it but given that it’s a physical exam where they see how far you bend, I was understandably skeptical. The bloodwork/genetic testing only works for those who have symptoms outside of hyper flexibility, like vascular issues. I can voluntarily dislocate my shoulders, my hips pop out of place randomly, my elbows bend backwards, my fingers get stuck in the wrong direction, and I can put my hands flat on the ground without bending my knees. I can’t do the thumb thing, but that may be injury related. My skin isn’t weirdly stretchy, but I do get deep bruises pretty easily.

    • thekitchensink

      704d

      Have you talked to your doctor about ehrlers danlos syndrome? I'm in the process with my doctors to check for it. It's genetic hyper mobility disorder with different variations and levels of severity. A physical therapist recommended talking to my doctor about it after my shoulder dislocated and my previous history of dislocations.

      • rj.crow

        702d

        @thekitchensink That’s exactly what I’m planning to do. I have a pretty extensive symptom list and a list of things to show my doctor while I’m there. I actually dislocated my knee at work today and it sucked

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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