Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Hey Jo, When where you in Florida?! And you didn't even call me, I am so disappointed in you! LOL For some reason I am getting the sweats again really bad. I am so hot and sweaty then of course freeze because of the damp sweat which as usually is mostly around my hair and eyes. I think that this Anodyne therapy has made the RSD come roaring awake again. And so far it is just making the foot worse, including the swelling. I am trying to hand in there thinking if I can get enough treatments maybe it will kick in and start making the foot better. Felice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Hi Tonia, Well, you know I hate that I HAVE to be on Neurontin, if there where an alternative I would take it. The comas are scary, not to me as I am not aware, but to poor Greig who the first time especially, had to come and visit with the doctors telling him that there was brain damage and that if/when I wake up who knows what I will be. And telling my father, over the phone, that it would be several weeks before I came around. I don't trust these hospital doctors anymore, well I guess it is Ocala doctors, they are so focused on the narcotics that they missed the Neurontin. I also started seizing when coming down on the Neurontin and think the only reason I didn't go all the way out was Greig giving me the Neurontin again. When the woman who did the EEG on me told me that she had never met anyone that could talk with my brain waves I was scared, I wanted off of this medicine but just can't find a substitute for it. Also it shows that we are taking strong serious medicine for a serious illness and we can't just stop taking the stuff. This should also show relatives that think RSD is only a thing that causes pain and "they" wouldn't have to stop doing things and take medicine if it was them coming down with RSD. It is sad to see all the wrong things happening to everyone on this list. I wish we could get on a TV show, I have written to Oprah and Montel and even to Phil, don't remember how to spell his last name. I can't remember if I wrote to Maury but imagine that I have. I never got an answer from anyone. Oh I wrote to Sally Jessie Raphael also. I thought it pretty disgusting that I never even got an automatic reply. Felice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Felice, I just wanted to jump in here and say that I wish it was making you feel better, not worse! Does the therapist say it will get worse before it gets better or is it too new to really know? I wish you the best, keep us posted on the foot. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 I just wrote to a show today, I hope if I get a response others would be willing to go with me as I don't know near as much as alot of people here. I don't want to get anyone's hopes up though and with past track record I'm not holding my breath, but will let you know if I hear anything. All this talk made me do it, I've been thinking about it but decided to take the chance as it can't hurt anything. Lori Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.