Can we get a dex board?

[samandmichelle]

With the potential this drug seems to be showing, and my certainty that it's going to be a big component in potential IC treatments in the future, is there any way we can get it's own board? I don't think it fits in the remission section, and I think it's got more to it that the alternative therapies section. If not - please just delete this post. Thanks!

[justice4j]

SamandMichelle,
What an excellent idea! :woohoo:

There is such interest in this very promising treatment! So many patients have reported such impressive success that I share your opinion that a new forum for this topic would be wonderful.:angel::smile tee:help:

WE could easily find new posts w/o having to search when the threads need to be closed because their length is difficult for dial up members.

You guys are tooo brilliant.:bow:

Another advantage would be the ease of gathering positive stories to take to our doctors or even write the FDA and NIDDK at NIH about it!

BRAVO!

[Mothergoose]

Here, here thats a good idea.

Mothergoose

[ngazerro]

I agree! :smile tee It will help with the people that are trying it...

[justice4j]

Hi Everyone,

Please read my post "Got My Dex Dr." Thought I'd post that here.

I'll have Dex in hand in a month or less. The Dr. is going to be on vacation and is booked up right until he leaves. No matter....I'll just call for an appointment and keep calling about cancellations, waiting lists....

What a relief!

Sam, how is Michelle sleeping? It was incredibly intersting to me that she is sleepy at night. Maybe her body is starting to relax from the pain lessening.
The other night I slept 12 hours and 45 minutes straight b/c the pain let up for a little bit.

Also, I don't think the sleep that you do get is ever really Quality Sleep when you have chronic pain.

Everyone, THANKS for being here for all of us.

Love and Hugs,

[Wolfe]

That's a great idea, a dex board. Then I can refer my doc to this site, that board, and he can read all about what he needs to research, even the names of docs who prescribe it or study it now.

Janet, AM I READING THIS CORRECTLY? Did you find a doc to agree to let you try dex? And you just have to wait for him to come back from vacation? HE AGREED? :woohoo:

[Wolfe]

Janet, I found your post! That's GREAT! He's excited that you understand, but I'm excited that HE UNDERSTANDS! I'm dancing all over the place here! Yea!! :woohoo::woohoo::woohoo:

[justice4j]

Hi Judy, Laura, Betsy, SamandMichelle, Nina, Mothergoose,

I have an appointment on August 19th with a psychiatrist!!!!!!:woohoo::woohoo::woohoo::dance:

The university scheduler called today!

I spoke with the psychiatrist on the phone Monday evening and he is VERY FAMILIAR WITH USING AMPETHAMINES FOR PAIN PATIENTS!

I think he is the perfect fit for me! He was a pediatrician before he was a psychiatrist, so again he's comfortable with this class of meds having treated ADD.

He is so pleasant and calm on the phone and even has a charming eastern European accent. He totally gets the UP REGULATED MICROGLIAL theory of why some of us unlucky folks end up with "IC and the 8 Dwarfs." I will have to pay cash as this uni clinic no longer accepts Anthem AKA Blue Cross. But, b/c I agreed that a resident could be present, the fees are substantially less. And...much less than flying to GA or KY.

Now I just have to wait 20 days to go to the appointment.

I feel like a big weight is off my shoulders.

Thank you everyone for your kind support, lovely emails and PMs. :bowThat helped me when I :bonk: hit so many brick walls.

Thank you to this board for adding a forum just for those of us on/interested in being treated with Dextroamphetamine.

:woohoo::dance:

[lmq78]

That is great!!! I hope you have success and start feeling better soon.

[ddscrazy]

Janet so happy to hear that you have such a postive Dr.and are really getting somwhere with this nightmare.I see you live in Anaheim,I live in Costa Mesa and only have the choice of one Dr.he is in Newport Bch.he is very good but I never get to see him, mostly nurse prac.she is very good as well.How did you get your Dr. to even consider the dextro?Mine just says thats not part of the medications he uses for treating his patients,andthats that.
I had my first bladder instill Tuesday with Elmiron,ldocaine,sodium bicar.Didn't even hurt kept it in for 3hours,but the next day thought I was goona flipout bladder was so sore,burning and bloated.Eveyone says to stick it out that it gets better sure hope so.
Do you know of any support groups in Orange county that are good?
Thanks to all of you out there who are suffering atleast we know its not all in our head!!

Take Care DD

[justice4j]

DD,

There is a support group in OC. I just wrote an email with one of the Dex articles attached. I had ONLY TWO replies. I'm hoping for more when maybe people are back from weekend vacations.

I have not heard back from the OC leader, but all the leaders are listed in the
Get Support area of this site. If you have trouble finding it, let me know.

I just saw your post now.....PM or email jans88s@yahoo.com anytime. It's good to know there's someone else close by struggling with this to confer with about local doctor sources who are willing to try this.

I have to tell you, I am a very persisitent determined person when I feel I need something and I have had very little luck with gyn or uro. Dr. Parsons does not Rx Dex per his secretary who fields his calls and does a great job. So if she says he doesn't do it, I believe her. I did send his research nurse the articles and some of the posts. Maybe I'll send her a link to the entire pages of Dex posts.

I find I'm better if I can figure out one more thing to do to try to get myself out of this PFD mess. That is what is the most troublesome for me. I read on another post that someone - sorry can't remember who- is taking Nerve Restore and having some success.

It's elusive to find what works for this beast. As someone else said, "it's an enigma within a riddle...."

[justice4j]

The first part of the post should have said that I emailed every support group leader in the US with a listed email. I only had 2 mailer daemons and 2 replies....:confused:

[ddscrazy]

Thamks for the reply Janet!!It is comforting to know that there is someone close by that is suffering with this HELL disease!!Sometimes just want to end it all but I have such a beautiful loving daughter and boyfriend that I cant bare what it would do to them!!Besides I know that is selfish.Just so hard to relate to people what we are suffering with and how painful it can be!!

Just had my first bladder instill on Tuesday and that was a total nightmare.I have been in a flare ever since,so needless to say I wont be going back for another till this one stops.

I have heard that there is a support group in Laguna Hills, but with gas prices I am just talking to all here.

I wish I could get my Doctor to atleast read the articles or his asistant.

I will e-mail you at your website ok?? Thanks so much everyone! P ositive energy to all!!

DD

[Wolfe]

Janet, just because he doesn't prescribe it doesn't mean he won't. I've had doctors before who were willing to listen and try new things. And my first uro got me into the Elmiron study 2 years before it was available on the market. So I'm hoping Dr. Parsons is the wizard for you!

DD, I just want to say, I know the feeling. And you might be better off here at the message boards than at a support group right now. I've had rough experiences with support groups, but I always learn something and come away encouraged from the IC Network, and I come here several days a week.

I don't know how many times I've said out loud to myself, "I don't want to do this anymore." But there's no alternative, except to keep taking one day at a time. There's just no way to make it all stop. I'm glad you take comfort in your family, even if they can't really understand what you're going through. If they're not there for you, at least you're there for them. This IC makes us all more compassionate people.