I just saw a new GI, who thankfully, ordered a gastric emptying study and Hida scan... BUT, he also made the mistake of having his "referral note" uploaded to my patient portal. He says "Upfront it should be said that Erler Dalos syndrome really does not have a lot of GI manifestations. She has a lot of preconceived notions about what is wrong with her GI tract and I am not sure there is much of anything to support most of those claims....". His note went on and on about how I couldn't possibly have certain issues because I weigh a certain amount(I'm not under weight), and how confused he was about why I was in his "small town office", when I had been referred to the most "famous" GI in Texas. Well, that other GI never called me back, which is apparently what he's "famous" for. I'll be waiting until I get the reports from my gastric emptying study, then I'll be educating this so called GI, as professionally as possible, via email, complete with links to every EDS/GI documented study I can find. Texas has NO specialists!
I would be reporting that doctor. It is not his place to say you have preconceived notions when you are the one dealing with your issues, and he obviously knows very little about EDS. Him ignoring your concerns in such a way is reason some doctors lose their license (it proves they are not following continuing education guidelines). Immediately call your insurance company to get a recommendation for a 2nd opinion when the results are in. Insurance companies encourage 2nd opinions because misdiagnosis and mistreatment will actually cost them more in the end.
The slides are available on www.ehlers-danlos.com/2018-eds-global-conference/ and we are trying, slowly, to work our way through our video library, but a transcript is not yet prepared.
It doesn’t explain why I have to take 8000 mg of magnesium to eat I Wise I can’t eat and I have tried a couple of therapies and nobody wants to do anything about it one doctor says to much magnesium another doctor says no more Zantac I have acid reflux that would kill you because it hurts so bad it burns all the way from my stomach all the way to my nose but stop taking that medicine and just deal with it with the magnesium if you got any advice let me know because I’m at my last wit Because I spend my life in the bathroom either throwing up or pooping my guts out
I can relate. Me too. Try Prevacid finally over thed counter. Its the only thing thats ever worked for my reflux GERD. Ive had it since I was a toddler. So you can imagine at 63 in a few days I've probably been on everything they make. Good luck. Where do you live? I'm in the LA area.
How are you now? Just wanted to say that switching to pepcid is a viable option from Zantac. I take it twice daily and it helps a lot with the acid reflux. Still can't eat as much because of GI motility issues, but at least the reflux is at bay now.
Too much Magnesium is over kill, 300 m.g. daily should be enough. Don’t forget your Calcium. I would take 40 m.g. Omeprazole 40 m.g. this is what I take for my Masocytosis. I also have a reflux issue not G.R.E.D. related, due to my Elhers-Danlos syndrome disease. I also take Hydroxyzine 50 m.g. to keep histamine low. I’m allergic to histamine etc. Zofran 2 m.g. and Promethazine 12 mg. Sometimes I take two of both antiemetics. Due to the daily nausea and vomiting. ✍️: Because
God bless this man, he is my GI and I feel lucky to be able to access his expertise.
I just saw a new GI, who thankfully, ordered a gastric emptying study and Hida scan... BUT, he also made the mistake of having his "referral note" uploaded to my patient portal. He says "Upfront it should be said that Erler Dalos syndrome really does not have a lot of GI manifestations. She has a lot of preconceived notions about what is wrong with her GI tract and I am not sure there is much of anything to support most of those claims....". His note went on and on about how I couldn't possibly have certain issues because I weigh a certain amount(I'm not under weight), and how confused he was about why I was in his "small town office", when I had been referred to the most "famous" GI in Texas. Well, that other GI never called me back, which is apparently what he's "famous" for. I'll be waiting until I get the reports from my gastric emptying study, then I'll be educating this so called GI, as professionally as possible, via email, complete with links to every EDS/GI documented study I can find. Texas has NO specialists!
I would be reporting that doctor. It is not his place to say you have preconceived notions when you are the one dealing with your issues, and he obviously knows very little about EDS. Him ignoring your concerns in such a way is reason some doctors lose their license (it proves they are not following continuing education guidelines).
Immediately call your insurance company to get a recommendation for a 2nd opinion when the results are in. Insurance companies encourage 2nd opinions because misdiagnosis and mistreatment will actually cost them more in the end.
I hope you found a new doctor.
This seminar was so very helpful. Thank you very much for sharing!
Thanks for this lecture! That's interesting, where can I see this diet study he said they were going to do?
Is there any way to get a transcript of this?
The slides are available on www.ehlers-danlos.com/2018-eds-global-conference/ and we are trying, slowly, to work our way through our video library, but a transcript is not yet prepared.
It doesn’t explain why I have to take 8000 mg of magnesium to eat I Wise I can’t eat and I have tried a couple of therapies and nobody wants to do anything about it one doctor says to much magnesium another doctor says no more Zantac I have acid reflux that would kill you because it hurts so bad it burns all the way from my stomach all the way to my nose but stop taking that medicine and just deal with it with the magnesium if you got any advice let me know because I’m at my last wit Because I spend my life in the bathroom either throwing up or pooping my guts out
I can relate. Me too. Try Prevacid finally over thed counter. Its the only thing thats ever worked for my reflux GERD. Ive had it since I was a toddler. So you can imagine at 63 in a few days I've probably been on everything they make. Good luck.
Where do you live? I'm in the LA area.
I've had 13 hour days twice.
I'm typically now at 5 hours I have no life.
www.med-health.net/Magnesium-Overdose.html
How are you now? Just wanted to say that switching to pepcid is a viable option from Zantac. I take it twice daily and it helps a lot with the acid reflux.
Still can't eat as much because of GI motility issues, but at least the reflux is at bay now.
@@GLGC688 I still have i issues with my gut sometimes I can’t and sometimes I can’t I take it minute by minute
Too much Magnesium is over kill, 300 m.g. daily should be enough.
Don’t forget your Calcium.
I would take 40 m.g.
Omeprazole 40 m.g. this is what I take for my Masocytosis.
I also have a reflux issue not G.R.E.D. related, due to my Elhers-Danlos syndrome disease.
I also take Hydroxyzine 50 m.g. to keep histamine low.
I’m allergic to histamine etc. Zofran 2 m.g. and Promethazine 12 mg. Sometimes I take two of both antiemetics.
Due to the daily nausea and vomiting.
✍️: Because