March 5, 2016 at 2:42 pm #979
My 17 y/o has many symptoms of EDS and ANS dysfunction. I am desperate to figure out a path to diagnosis and I would so love to consult with Dr. Diana by phone to get suggestions on who to see/thoughts about how to proceed. We are in Canada and have gotten nowhere medically for almost 10 years. We have figured out ways to cope with some symptoms but things are progressing and I believe she does need actual medical attention. I am going to make an appointment with Dr. Tinkle but that will be an 18 month wait. Thank you!March 7, 2016 at 2:22 pm #5900MissButterflyParticipant
Sorry to hear your daughter is struggling. I basically have the same questions as you. Maybe a Skype consultation, since I live in Europe. So many questions and suffering, and so little help.
Love MBMarch 7, 2016 at 4:05 pm #5901
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.
NellMarch 7, 2016 at 6:17 pm #5902BarbaraParticipant
May I suggest you start by obtaining copies of medical records and especially copies of any MRI’s, CT scans, & X-rays. Then take a look at what’s really going on. See Dr Diana’s video on “Raw damn data!”
Once you have them, read through the topic regarding MRI’s. to the right hand side of the forum page and see if you can find any similarities.
Have fundus photo’s taken of the eyes, at the opticians and get them to check Dr Diana’s list for any subtle differences. Ensure that you can have online access to these if you can, so you can enlarge the image and look for yourself. The eye is the only place you can see the blood vessels directly.
Also look at ‘Magnesium Deficiency’, Dr Diana has a video on that too, there’s also a report with many links to associated research, atMarch 8, 2016 at 5:25 pm #5903
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.March 10, 2016 at 5:47 pm #5905BarbaraParticipant
You mention VEDS and I too wondered that about myself but, even though I went to see a specialist about this, it was decided on a visual examination that I didn’t have it. Having checked my genes personally, I’m reassured that I don’t have it either.
However, many of us still have translucent skin and more visible blood vessels than most people. I’m curious, are any veins more visible ? Also, are any prominent ?July 14, 2016 at 3:24 am #5985MissButterflyParticipant
Thank you for great advice, Barbara!:-) How is the situation with your daughter, Nell?
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