Gp Referring Me To Gastro

[skbird]

Earlier this summer (June) I had gone to my GP to basically brag about how well going gluten free was going for me and could I just get some basic tests for autoimmune stuff just to make sure nothing else was going on. I then tested neg on all thyroid stuff and most arthritis stuff but had a positive ANA so my GP sent me to a rheumy who tested me for everything and determined that while I still had a positive ANA, I was ok. The weird thing was about the time I got the first tests done, I started having joint pain, was already having increasing chest pain, and lots of stomach problems (IBS, etc). I spent about two months this summer not feeling well about 80% of the time. But the rheumy said I was ok and I really should see a gastro for my stomach stuff.

So I called my GP and he said I had to come in first (grrr, I have to pay for everything until I hit $3,500 so that wasn't very cool) but I went yesterday and saw him, after trying to decide if all this was really going to be worth it. Turns out the problem was that about 2+ years ago this GP of mine had referred me to a gastro (I forgot...) and I'd cancelled on the gastro because I was not symptomatic at the time. My GP had referred me because I had told him in my initial appointment that I was diagnosed with IBS at 22 (I was 32 at that point) and that I did have some food reactions, but wasn't sure what all else.

Evidently, the gastros in my town are so busy (uh, that says something, doesn't it?) that if you cancel on them, they may not take you again. So my doc wanted to warn me of the difficulty in getting me back in and to tell me how gastros operate. I was feeling like I was being scolded and so I asked if that was the case, or if I had "difficult patient" on my chart and he said no, but that he knows me and appreciates my abilities to think and that while I don't always come to the same conclusions he does about my health, this is because he thinks from a clinical point of view, while I don't and that he's also sure I know lots about some things he knows little about, as he's into breadth and I'm into depth. He also said the gastros diagnose by algorhythm, meaning they start in one place, and if the result/answer is yes, then they go to this next step, and if it's no they go to this other step. He said they don't have a lot of time to talk so don't expect that at first, and that they will be very thorough. And if they need to give me a med to calm something down first, then I need to do that.

I asked again if I was being scolded and he said no, he was just trying to prepare me for this experience. He said that after a certain amount of testing, they would either know what was going on or wouldn't and then they could talk more about it and we could come up with a more "exquisite diagnosis" - his words. And that if they had no luck, he could send me to Davis or Stanford - both big medical schools. I kind of freaked at that because anyone I've known who's gone to either of those has been REALLY sick (or dying) and I told him that. I also apologised for not going to the gastro at the time but said I was not having symptoms, this has happened before in my life where it all goes away. He said that is the nature of IBS, which he also said is a diagnosis of exclusion (which I already knew).

I told him that I was concerned about the gastro looking at gluten as a problem because I don't eat it, unless glutened (which to my knowledge, only happened once this entire summer, when I had Tums). He said, Gluten is everywhere! how do you know? I said, yes it's everywhere, but you have to understand I am so fastidious, I have done things that not even most people know to do, like toss my no-stick pans, etc. Also I know very well my gluten reactions now, and how miserable I was for two weeks when I had 4 Tums. He then said that I may find that gluten isn't my problem. I said definitely it is a problem, but he said, it may not be the *big* problem. Well, yeah, that's a certain possibility, why would I have been getting so sick all summer?

Anyway, I am of mixed feelings about all of this. I am not crazy about having to submit to a series of tests with little dialog with the gastro. I don't think I'm so sick I should be sent to a medical school center. In fact, most of the time I have a hard time wrapping my brain around the idea I'm sick at all. (denial? or what? I just don't know.)

One thing I am certain about, I am pretty sure my goal of going to England for my birthday next June (35th birthday - we went to England for my 30th) is just about shot. I have a small savings account that will get wiped out ($1,000) by this as I already owe about that much for my rheumy stuff this summer, and I will be on the hook for the next $2,000 until my insurance kicks back in, and then Jan 1 it starts over again (another $3,500 to pay out of pocket). So I am confused, mildly depressed, and wondering what will/can come of any of this and will it be good. Sigh.

Anyone have any analysis of this? If I bail on the gastro again, my doctor may never speak to me again!

Stephanie

[Guest GITRDONE]

Hello Stephanie, I can recomend a doctor in Reno (I know it means about a 3 hour trip +$), but as I stated in a earlier thread I think I have seen about 10 different doctors over the past 16 years, and I walked into Dr, Sande's office and did the same symphtom speech I give all the other docs (blah-blah-blah) and he picked right up on Celiac. Something I had never even heard of. I think after being so sick for so long, so misdx, same doc just different meds, that we say the same thing over & over like a memorized speech. I tend to forget the little changes and/or you just seem to "deal" with it because you don't want another med or hear that something "else" might be wrong with you, something else you have to deal with. And also like you, why would I go to the doctor if I feel good???? I find it so easy not to go for the follow ups, beacuse I do feel good. But I have to admit that since I have been reading all I can in this forum I have made a list of blood tests I want ordered before my next follow up visit (next month), just so I don't have to make two trips to Reno (I live near Susanville, Ca.).

My hat is definetly off to you. I don't have near the allergies or illnesses you have to deal with, (I don't think, one the tests Im requesting is a food sesitivity test).

Also, I have never heard of a doctor refusing to see someone if they skipped a appt., maybe charged them, but not refuse them.

Good luck, and if I can help let me know.

Susan

[skbird]

Yeah, I think the bit about making it harder to get me in is a little odd. I mean, I can understand they are busy, but that isn't enough of a reason. I have also heard there is a great gastro in Grass Valley or Nevada City, posted by someone on this board or another. Anyway, if I have difficulty, I will look into other docs. I am having a bad IBS flare up this week, it's making me mad because I thought this was all based on my food issues but since I have eliminated so much and am still having flares, there must be something else going on.

The worst is that I don't at all think of myself as sick. Not at all. I think there must be a missing cog in my brain!

Thanks, and I'll keep this in mind in case I can't get in, at least this year! (would like to have all testing done before Jan 1, when my insurance renews...)

Stephanie