Hello Rebekah,
My name is Arjuna, and I am an intern here at Ben’s Friends. I wanted to take the time to welcome you to our support community. I am so sorry to hear the lack of attention and understanding specialists have given you, and am really hoping your next appointment will give you better pointers. It is such a sad truth about having rare conditions- not many physicians have enough information to pinpoint exactly what is going on, leading to such a massive misdiagnosis rate regarding rare diseases. Kudos to you for looking out for yourself even at the negligence of the physicians, and I hope that your symptoms improve soon enough!
Have you tried the Bob’s protocol yet? If so, we would be excited to hear how it went! If you have any doubts, you have definitely come to the right place. I am sure you may have noticed the search icon (Magnifying glass) on the top right corner of the screen. This is a great way for you to sift through existing topics and discussions that may be of help to you, as it may give you a sense of what others may have tried to alleviate their symptoms. I did a quick search for any existing discussions containing the word “Bob’s protocol”, and here is the link to that:
https://forum.livingwitherythromelalgia.org/search?q=bob%27s%20protocol
I also highly recommend that you create your own discussion thread (by using the + New Topic tab) if you have any particular questions for us. I know it has been a while since you have come on here, but I am wondering if you’ve had your appointment with the vascular doctor yet? If so, please feel free to share with us what happened!! We look forward to hearing from you Rebekah, and we wish you all the very best.
Take care,
Arjuna