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Gomindy21


Notgivinup
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Hope it went well for you!

It went really well! I was pleasantly surprised. Bev seemed really knowledgeable and answered a lot of my questions. She diagnosed me with Joint hypermobility syndrome along with my pots and ordered a blood test for my norepinephrine levels along with vitamin D and a type of blood platelet blood work. She said that she thought my hair loss was due to depo provera. I will probably get my hormones checked out through my Ob-gyn. Since I am not a big medicine person, I was very happy that she was able to work with that. I have been doing much better lately and she was okay with me just trying reconditioning and biofeedback and seeing how that goes. I will be seeing Dr. Grubb in a few months as well.

It 's nice to finally have some answers, isn't! I'm glad that your appointment went really well too! Do some of the changes in your medicine seem to be helping?

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I'm glad your appt. went well! :rolleyes:

Please see a geneticist or doctor who specializes in connective tissue disorders and EDS to get the proper diagnosis of joint hypermobility. Did she recommend that you see a doctor to confirm the diagnosis?

Maybe Dr. Grubb can recommend someone who can verify the joint hypermobility.

Maxine :0)

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I honestly can't remember if she did or not, but I will definitely ask Dr. Grubb when I see him. She did do a check point of the different areas. I think that she was working first on finding out what kind of POTS I have, and doing some platelet blood work which I think has to do with the JHS. They are also waiting for my results of the event monitor that I had to make sure I don't have any other abnormalities that need to be looked at. Thanks for the suggestion :)

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If you do have a confirmed diagnosis of joint hypermobility, it's important to have a cardiac echo and an aortic ultrasound. All type of EDS have this screened. Seeing a connective tissue specialist/geneticist is really the best way to go to get a proper diagnosis, and for any advice on treatment plans.

Good luck to you--- :)

Maxine :0)

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