[Anonymous June 6, 1997 at 5:41 am Post count: 93172]

#1055457

Dear Shirley, I think your last message was for me, unless someone else asked you how you are when I
wasn’t looking. I do hope you will consider participating in the survey.
You really don’t want a job monitoring the board, it would keep anyone busy.
The first time I wrote to you, I said I wouldn’t call you Dr. because I
assumed that you came to the board hoping to find friendly understanding
support, not because I don’t appreciate your field of expertise.
Of course when you revealed that you are a dentist,we all just jumped
on the opportunity to ask you questions anyway, but I hope that won’t be
all we can share. The uncertainty of GD is almost as difficult to deal with as some of the symptoms.
It sounds like you have had quite a bit of experience with the unknowns
already. Are you aware of the conference this summer in Colorado Springs?

I don’t know what lots of the folks who dialogue here do professionally, but
I assume that they are all, like the cows down the road, outstanding
in their fields. I appreciate how Redhen sparked your restating what you were
sharing, it is hard to understand the actual relationships of casality when they are simultaneous
or sequential struggles with different ailments. I think you will find here a group
of people who are frustrated with the generic answers and who make an extra
effort to understand what is happening and what can they do about it.
Some of us are brainstormers, some of us are detail and ramification focused,
some of us don’t care what any of it is called or related to-just make it go away and some of us
would try anything to get rid of it.But we have two things in common
here, we all have GD and we really do need each other. Best wishes to you, Jeannette

[Anonymous June 14, 1997 at 11:41 pm Post count: 93172]

#1161039

Dear Jeannette,

Yes, I’ve spent a lot of time on-line, trying to get through these past 3 or 4 days. It has been really tough. As far as I understand, B.B. messages are public property, and despite their being directed to the author of a previous poster, you have all the right in the world to read them and respond. You may have insight that could really help me in making the right decision about my options.

I really like the idea of staying on the medicine as long as possible to see if I would be one of those who would go into remission. But hives, if you have ever had them, you know, are hard to ignore. A skin rash is something I could tolerate as long as I was not faced with a health risk. But hives are like the worst mosquito bites, spider bites, and chigger bites rolled up into one giant never-ending itch! I tried taking the PTU and the antihistimine combined, but the hives came back within two days, and the antihistimine turned me into a vegetable. The same happened on the tapizole. I am not 100% sure about RAI just because of the potential for over-treatment. But with the information that I have found on-line–including some of the questions, answers, concerns, etc– I can face my endo with confidence now. I can go in with a barrage of questions, i.e. what about other antihistimines, what are the risks associated with RAI in my case, etc.

I am glad for your conservatism about the RAI. As I have read some of the messages posted before I began writing, I got a similar sense of regret from many of those who had written about the post-RAI symptoms.

It just seems that there are so many more questions than there are answers

Thank you for your honesty, Manders

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