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I'm Seeing A Genetic Counselor Soon


Beccapooh
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Okay, I know that this is a Dysautonomic/POTS site, but, I have to say that after speaking to the gene therapist over the phone I was amazed at how many symptoms of POTS that there really are in VEDS.

I still don't think that it accounts for ALL of my symptoms, clearly, but, it still amazed me how many things crossed over. She was telling me that she thinks that EDS, in general, is under diagnosed because so many people attribute the symptoms either to aging, or the cycle or just being crazy, whatever. Much like we POTSy folks do.

Anyway, I'm going to bite the bullet and go ahead and do the biopsy to make sure that I don't have VEDS. Again, after speaking with her and answering all of her questions, she seems "pretty sure" that I "probably do" have VEDS. Boy did she ask some intimate questions or what???

She also said that having the MVP and probable MVP Syndrome, actually was another "symptom". She really feels that things are linked together and that it might even be the VEDS that caused the POTS.

I guess that my point of even posting this at all on this site, is just to bring it to the forefront of peoples minds. Awareness is power. If your symptoms/issues don't seem to completely be explained away by POTS alone, don't be afraid to keep digging!! We all deserve to feel better and live happy lives. I'm just glad that I'm finally being my own best advocate, you know? It's hard to feel worthy after so many doctors have made me feel crazy, but, I'm going to make myself a priority. If, for no other reason, then my children. They deserve to get their Mom back (or as close to it as I can come!!).

I will keep y'all in the loop as to what the actual Genetics Doctor says, too. My appointment was scheduled for tomorrow, but, I decided to move it back a couple of weeks until both of my girls were in school and doing well. That way I could actually go to the doctor alone (what will that be like??).

Let me know, via PM, if any of you are curious or have EDS symptoms. I would be interested to see how many cross overs there really are.

Bec

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