might as well make another update
I saw Dr. Castells, who is apparently at the forefront of masto research and she has decided to put me on the pretty typical regimen of hi1 and h2 blockera and gastrocrom. then my husband and i are going to go to canada to get some ketofin, since that is supposed to be the best drug aside from the gastrocrom
( Read more... )
Anyway......
I would like to start off with the fact that I have what I consider to be a healthy distrust for the medical community in general. That is why I'm sure you have to be your own doctor/researcher because no one else is...(my mother has been in the medical profession for a zillion years and we argue about this all the time, but thats another story )
A dozen years ago I went to see doctors at UCSD Medical because i was concerned that the spots that were appearing on my back and upper arms were cancerous because I spent most of my life surfing and frying in the sun.....
The first doctor freaked out because she thought I had some infectious disease and didnt want to put the blood pressure thingamabob on me......That was wonderful.......
The second doctor COULD NOT get over the fact that I cleaned my ears with Q-Tips......ear wax was healthy...he was visibly distraut over my Q-tip abuse and thats about as far as that went.........wonderful.....
The third doctor thought perhaps I drank too much beer (which might be true ) yet was smart enough to refer me to the skin specialist....
The skin specialist had no idea what was going on with me so he cut a piece off me and sent it to the lab....came back a week later, according to the manuals it was urticaria pigmentosa.( I'm sure I have TMEP masto but thats another story) It was an orphan disease, so I got the "sorry cant help you but you might try PUVA which really doesnt help".........wonderful.........
I understand youre seeing a masto specialist. Does this mean she's researching for a cure? If so excellent,yaay.......
If all youve gotten is H1,H2,Gastrocrom & PUVA................................That infos been around for 20 years.....
Did you know the only documented full remission cure for UP or TMEP is Total Skin Electron Beam Radiation (i think I got that right....google Masto UP/TMEP treatment and you'll find it )..........sounds scary........
Why did this work and whats going on here,? Why isnt this addressed on the masto boards? Have the masto boards turned into the whine about my problems, waiting for the doctor to tell me what to do boards?,...........
by the way .........whats a masto list?........
Hope you're doing well
and if I havn't annoyed you too much I'd like to expand further later
Have you found out anything interesting?
Talk soon
Tony
Reply
i have not even heard of PUVA, what is that?
have you done the Total Skin Electron Beam Radiation? where did you find that it was a cure? i looked it up but i didn't really find any relevant info on masto.
a masto list is a mailing list for people with masto, where they discuss new research, treatment options, etc.
Reply
you've been silent, i hope all is well
Reply
Leave a comment