Has anyone experienced a flushing on their inner arms and inner thighs?
I’ve had thus now happen daily. All of a sudden I have blotchy skin and feel ill and hot or stail air.
These episodes started here Abd three but now are daily and some days multiple times.
The hematologist saw it in her office and said it was some kind of flushing.
On to a bone narrow biopsy next.
Hope you all are having a pain feed day!
I have flushing in those areas, but my entire body can flush and burn. It starts off as you described, blotchy, but for me thats like a starting point and it quickly spreads.
I spent 7 years listening to doctors telling me they thought it was endocrine related but my blood pressure is also uncontrollable and reaches 200/120 (I’m 28 at the moment). Eventually went to the NIH’s undiagnosed disease program(2015) and had a dotatate scan, and they’re pretty confident that rules out NETs in me.
My current neurologist at University of Washington is pretty confident I have EM. We have my entire genome sequenced but there are no known mutations in it.
So as of now I’m told all I can do is wait, and unfortunately none of the medications really help. Hopefully you’ll have better luck.
Hi Steve - just wondering who you see @ UW - are you happy with your care? I have yet to find anyone in the area who is knowledgeable about EM. Thanks!
I see Dr. Oakley at UW:
http://www.uwmedicine.org/bios/john-oakley
I’ve seen countless doctors here in Washington over the 7 years. I’ve been to Mayo and MDA, along with the NIH, and he was the first to mention EM. I actually scheduled an appointment with him because the NIH suggested that I had dysautonomia+urticaria and he was the head of the new dysautonomia wing UW was opening at the time. He had mentioned EM almost straight away. He spends a generous amount of time with me and answers any questions I had. He also had mentioned Dr. Waxman and sodium channel blockers but since I didn’t have the gene mutation we never followed up on that discussion.
He had also taken a picture of my flare up and showed it to whomever, and told me that they agreed with EM.
My only issue is their scheduling. Appointments are 6 months out (which seems to normal everywhere now) and the only ones that schedule appointments for him are the nurses, which are a pain to get a hold of sometimes.
If you haven’t already, I’d stay away from Virginia Mason. I saw a couple of neurologists there and they told me that whatever I had wasn’t neurological after 5 minutes and there was nothing they could do.
Thanks so much for the info Steve - very helpful! It would be so great to finally talk to someone who actually knows a bit about EM - even if I have to wait until Dec. I really appreciate it!
I do believe that if I don’t get myself into a cooler area then it woukd spread. I start to not feel well. Stale air.
Sit And wait is unacceptable. Totally unacceptable!
They think I too will sit and wait. Just like you. Well there is a reason for primary em. Researchers will need to do their work and find out the reason. We aren’t sitting ducks. We are humans. We deserve care and help.
I am starting to get this process going. I will be posting in the upcoming weeks.
In the meantime I’m going to keep the faith that there is going to be answer… For primary and secondary.
I have had EM on my inner arms and on my inner thighs too. I just figure I have tiny dysfunctional vessels all through my body, so it can happen anywhere. Acupuncture helps me as it goes through a different pathway than medication. But we are all different…I wouldn’t put up with a doc saying it is just some kind of flushing. It is demeaning and doesn’t take into account that no one really knows much about this disease.
My bone marrow came back normal, and I hope yours does as well.