[Nell3]

Thank you for your suggestions. I will definitely do all of those things. One of the problems is the lack of raw data. Things are very different in Canada (at least where I am) with regards to getting testing/seeing specialists. After ten years my daughter’s GP did recognize that her lifetime hx of sx and aspects of how she looks could be VEDS. The specialist we waited six months to see literally laughed it off along with many other very debilitating sx (like very limited mobility due to hip pain that had begun 1 yr earlier). My GP did sign the paperwork I downloaded enabling us to pay for the genetic test ourselves from the Diagnostic and Collagen Lab in WA. Thankfully it was negative. I am going to have to think way outside the box regarding how to get more testing, see the right specialists as it is not going to happen where I am.

I appreciate your suggestions and will be pursuing them for certain.

[Nell3]

Thank you so much for your reply MissButterfly. I am sorry to hear you are in a similar situation–so much suffering, so few answers. I am so sorry. Wouldn’t that be wonderful if there were a way to skype with Dr. Diana? I will be holding on to that hope for both of us. I believe with all my heart we can find our way to things that will help.

I read the interview with the low histamine chef (link is on the twitter page for Dr. Diana) that Dr. Diana gave regarding the connection between the vagus nerve not functioning properly and many illnesses, including EDS and Dysautonomia. I have long,long recognized there was harm done to my daughter’s vagus nerve (virus, head trauma involving compression to the neck and sadly emergency abdominal surgery). The interview filled me with hope regarding finding a path for healing the nerve. I have ordered the supplements Dr. Diana developed and I will post after we have started with them.

xo
Nell

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