Well I heard back from both my GI and Hematologist after my little "episode" this week.
The Hematologist is thinking that the immune globulin issue is a gut issue which I can agree with. He's researching to see if there is a test that can show I am losing protein through my bowels (there is, already looked it up but I'm not saying anything).
The GI verbatim "Your colonoscopy was clear 6 months ago, I see no reason to chase these CT results"
So in other words, I have no recourse, no treatment to speak of and I'm left hanging again. I have given up any hope of anyone ever finding out exactly what my deal is. I guess it must be Crohns .. but who the hell knows.
I'm just determined to take care of myself the best I can and hope it either gets better or gets tremendously worse so that someone will take me seriously again. I've gone back on B6, B12 and I've added Potassium supplements since I seem to be chronically low on it, I'm aware you can overdose so I'm being very careful and following the directions on the bottle as well as my dietary intake. I've switched to almost completely liquids, boost, gatorade and clear soda. I do feel somewhat better on this routine so I'm sticking with it. I have had one meal this past week and it set ok .. but caused some lovely D.
I'm going to start looking really hard for work and if I get something then I'll just have to cross that bridge when I come to it, insurance issues and everything else that will come in to play. I just can't sit here anymore hoping a doctor is going to figure it out. The only biologic I haven't tried is Remi but given the terse responses I've seen lately from my docs I doubt they'd want to even try it. I have a nearly full scrip of Aza but I don't think self medicating with it given the side effects is a good idea.
So yeah .. pretty damn depressed right now but I'll get through it just like I always have.
The Hematologist is thinking that the immune globulin issue is a gut issue which I can agree with. He's researching to see if there is a test that can show I am losing protein through my bowels (there is, already looked it up but I'm not saying anything).
The GI verbatim "Your colonoscopy was clear 6 months ago, I see no reason to chase these CT results"
So in other words, I have no recourse, no treatment to speak of and I'm left hanging again. I have given up any hope of anyone ever finding out exactly what my deal is. I guess it must be Crohns .. but who the hell knows.
I'm just determined to take care of myself the best I can and hope it either gets better or gets tremendously worse so that someone will take me seriously again. I've gone back on B6, B12 and I've added Potassium supplements since I seem to be chronically low on it, I'm aware you can overdose so I'm being very careful and following the directions on the bottle as well as my dietary intake. I've switched to almost completely liquids, boost, gatorade and clear soda. I do feel somewhat better on this routine so I'm sticking with it. I have had one meal this past week and it set ok .. but caused some lovely D.
I'm going to start looking really hard for work and if I get something then I'll just have to cross that bridge when I come to it, insurance issues and everything else that will come in to play. I just can't sit here anymore hoping a doctor is going to figure it out. The only biologic I haven't tried is Remi but given the terse responses I've seen lately from my docs I doubt they'd want to even try it. I have a nearly full scrip of Aza but I don't think self medicating with it given the side effects is a good idea.
So yeah .. pretty damn depressed right now but I'll get through it just like I always have.