Messahe for Jeremy R - Inner Ear Disorders Message Board

aja · 08-16-2003, 06:28 AM

Hi Jeremy, hope you get this, just wondered how your were getting on with things..PET and stuff. I tried to get hold of the premarin spray but the specialists aren't happy about giving it to me because they say it could be very dangerous..increase the risk of cancer of the womb.
How is your PET? Have you considered going to see Dr. Poe or Dr. Kujawski again. I'm looking into ways to possibly get it paid for because I can't afford it at the moment.
aja

JeremyR · 08-17-2003, 10:46 PM

Hi aja,

Actually, I have a one year follow-up with my estrogen treatment on August 25th. This is my eighth year having this disorder, and I have accumulated a large binder of information about it. I haven't been keeping up with new posts as much as I used to. Those of us with PET should operate our own website with new information, and have our own forum. I must admit that I've lost track of some of the things I wanted to look into. (I still think there might be a TMJ Connection with me) I am beginning to have my doubts about the safety and efficacy of my estradiol. It doesn't seem to work as well as the premarin, but its all I have right now. I am aware that there is much controversy about estrogen in the media, but my dosage is so small, and I'm not digesting it. I'm only putting a little in my e-tube. We are still awaiting Dr. DiBartolomeo's "Patul-end" to be approved for distribution over here. I received a packet that invited me to participate in the phase three clinical trial, but I have not done so. Dr. Poe seems like the best option for a lot of us, but that's not realistic for me right now. Maybe more Doctors will begin to duplicate his treatments. That's about all I can say at the moment, I'll post with an update after my Dr. appointment later this month. And I'm serious about that website/forum thing!

aja · 08-19-2003, 10:55 AM

Jeremy, there is a forum practically monopolised by PET sufferers, I'd be amazed if you have come across it already [url="http://www.eustachian-tube.com/"]http://www.eustachian-tube.com/[/url]
I want to get my jaw checked out for TMJ too, I feel like I have a long list of things to look into also. I was invited to partake in that Santa Barbara study but it never happened, couldn't get a specialist to partake in it, but to be honest the ingredients sound horrific. Jeremy, I want to ask you two things, do you know if it is possible to have TMJ without actually knowing it, or does one always experience some kind of pain in the jaw? Also, do you know if the people having this calcium injection (with Dr. K and Dr. Poe) have to have a grommet as well (little tube in the drum)? because that would seriously put me off having it done.
about the premarin, apparently one of the best ways to absorb anything is through the lining in your nose, I was told I would most certainly absorb the estrogen.