Chronic Health Conditions Discussion and Support

mopinko

(72,618 posts)

21. my daughter's pcp thinks she has this.

Reply to DeadLetterOffice (Original post)

Tue Aug 2, 2016, 08:50 AM

Aug 2016

she is a medical mystery at 22. every system in her body is weird and fucked up. so f'd up that one doc was sure she had mitochondrial damage.
he sent her to a geneticist who was an ass, and wouldnt test her. she is looking to see another one. i mean, wtf, dont all docs run the test to be sure?

i am sure she got it from me, if she has it. i am also a medical mystery.

i wonder if you ever had an ana panel. this daughter and her sister and i all have a strange pattern that looks kinda like lupus, but isnt. high ssa, but not ssb. plus mct is high. i was told i have some sort of mixed connective tissue problem, but dont know what. arthritis started setting in in my 40's, and have fibro dx. pretty well controlled right now w meds, but has been a real problem.

it does help to at least know. those years of docs shaking their heads, and tests that show nothing are frustrating and depressing.
hope that you can find some help to at least ameliorate your symptoms. glad it is not affecting your heart. daughter has heart trouble, too.

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Newly diagnosed with Ehlers-Danlos Syndrome... [View all] DeadLetterOffice Apr 2015 OP

I really am sorry for you and your kids. RGinNJ Apr 2015 #1

Thanks RG. DeadLetterOffice Apr 2015 #2

I just read up about it. dixiegrrrrl Apr 2015 #3

We've got the hypermobility subtype. DeadLetterOffice Apr 2015 #4

I had never heard of that until recently when I learned.. 2theleft Apr 2015 #5

I hope the best for you and your kids... Holly_Hobby May 2015 #6

I saw a genetic counselor to diagnose. DeadLetterOffice May 2015 #7

Ok, that makes sense... Holly_Hobby May 2015 #8

Good luck! DeadLetterOffice May 2015 #9

They say a geneticist is the best person to diagnose. I actually did a lot of research on my own Seeinghope Jun 2016 #15

I have not heard of this but I am glad you got a diagnosis. DawgHouse Jun 2015 #10

It really is. DeadLetterOffice Jun 2015 #11

So sorry, DeadLetterOffice. pnwmom Aug 2015 #12

Try not to do the guilt trip DeadLetterOffice Aug 2015 #13

Thanks, DLO pnwmom Aug 2015 #14

I am glad that you finally got a diagnosis. For me it connected all of the dots. Seeinghope Jun 2016 #16

Connected all my dots, too! DeadLetterOffice Jul 2016 #19

The daughter of a friend of mine has one of the variants of this Nac Mac Feegle Jul 2016 #17

I'm sure you mean well. DeadLetterOffice Jul 2016 #18

I have no intention of being condescending. Nac Mac Feegle Jul 2016 #20

Amen. DeadLetterOffice Aug 2016 #24

my daughter's pcp thinks she has this. mopinko Aug 2016 #21

just got dx'd myself Paula Sims Aug 2016 #22

Hypermobile (type 3) DeadLetterOffice Aug 2016 #23