Finally went to the doctor

[MightyMouse]

Well... I said I would go to the gastro, and I did last week. Big giant sigh.

He flipped through and stared at all the pages of my chart like 10 times before saying..."well...let's just hope that it goes away like the other times; but just in case, go get another sonogram." That was reassuring. NOT.

I think that after 6 or 7 years now, he's just at a loss for what to do with me. He's a really good doc and has never questioned my diagnosis or how much it affects me. In fact, he's been more protective than some of my other docs because he knows I really don't show up at his office unless it's REALLY bad.

Haven't scheduled the sonogram. I'm on strike. Okay, I'm not really on strike but this doesn't feel any different to me than any of the other pain and nausea cycles I've been through. If it gets worse I'll go. I figured most of you could relate at not wanting to spend the time and energy on another test that's going to be read as perfectly "normal".

On a good note, he refilled my Levsin, which has helped a little. Nina

Edited January 27, 2004 by MightyMouse

[genie]

I am right there with you on your frustration and the ?strike? I go on those as well, which I?m sure drives my doc crazy. My doc yesterday put me on antibiotics to see if it?s a bacterial infection causing all the stomach and intestion pain? Don?t like taking those but after a lively discussing I compromised and said I would try them. If this doesn?t help he wants to send me for the colonoscopy ? yuck?? What would the sonogram show? I?ve had the drink the white chalk stuff and have the CAT scan which didn?t show anything, had my gallbladder removed etc.. and still this tummy stuff jumps up and grabes me occasionally. Luckily most of the time I can live with it on the med?s but sometimes like the past couple of weeks it puts me in bed. Thanks for sharing and I?d be interested to know about the sonogram if you can share!

[MightyMouse]

Sonorgram would only show fairly gross abnormalities, like a blockage, stones, major inflamtion, tumors, cysts, etc.

I don't have a gallbladder anymore either. However, I've had what I call my "phantom gallbladder" attacks that started about a year after I got it out (so, since 1996). Several years ago they were thinking that I have scarring on my bile ducts, and the believe my sphincter of odi has become stenotic--they wanted to do an ERCP, for which I said NO WAY (20% of patients get pancreatitis from the procedure, which can put you out of commission for up to 8 weeks on IV heavy duty pain killers in the hospital).

They've had me on the anti-yeast diet, which helped a little until we realized the problem for me wasn't yeast or bacteria, but the fact that I can't eat gluten (rye, wheat, barley products). Since the yeast free diet is relatively low carbs, I'd essentially put myself on a gluten free diet. However, after years of tinkering with the diet, other carbs don't bother me--like rice, corn, tapioca.

I've had ALL the tests. HIDA scan, CCK HIDA scan, GI series, Small Bowel Series, GI motility study, Colonoscopy, Upper GI, Upper Endoscopy (x7), CAT scan, MRI, yada, yada yada. OH, and at one point last year, they did an exploratory laparoscopy. I've been throughly checked inside and out. I believe the cause is really ANS related and when I go to the doctor, all I really want is symptom controll... nonetheless, I think he's hoping to be the one to find that elusive holy grail--or at minimum, find something he can actually FIX. I don't even go there in my wishing and hoping

Thanks for your thoughts on my medical test strike Nina

[Guest tearose]

Well, good thing you went to the doctor. If for nothing else, it reminds them that your still dealing with an unresolved issue that you live/deal with. If you weren't feeling so poorly, you surely would choose to do something else with your time and energy!

I can relate to the thick medical file and flipping the pages...sometimes when I need to lighten the moment I jokingly ask my doctor if he would consider a coupon booklet for "buy 6 tests and get one free"...at least your doctor keeps trying to help you.

Sometimes they really don't know what to suggest. As you know, the tests aren't always conclusive, or even the right test. I sometimes have to do my homework and suggest a specific test or treatment. Has your doc talked about the MRCP? It is a non-invasive ERCP. It is a form of MRI and contrast dye....although it didn't find my gallbladder problem at the time, it found things in my kidney and liver that we now are watching. I do recall it looks at all the ducts and spleen...maybe it would be good for you.

Is that medicine you are on really helping? Just don't put off resolving the real problem by trying a band-aid fix. If you need encouragement to push on then here it is...Push on!

[MightyMouse]

Thanks Tearose

I'd never heard of an MRCP. Hmmm. BTW, here's the very strange thing about my gallbladder. I had no stones whatsoever. It just stopped working and lost tone & size. A healthy gallbladder is the size of a small bannana, and should be a pearly greenish-yellow. Ones that have stones can get pretty big and ugly. Mine was the size of a pinky finger and was grey, and had loads of adhesions on the outside. It was stuck to my liver and had to be cut away. Not sure if maybe there was an autoimmune process or an infection. My doc does keep testng me for the autoimmune factors--but I still don't test pos for any of the more specific tests.

Just a note: I DID get all my bloodwork done. That's something I don't skip. Easy enough and doesn't take up much of my time--and likely to be the first thing to kick me in the butt to get some of the other tests done or see a different doc if needed. Been seen by rheumetology many times--nothing yet although we're still watching.

Oh, and this is for EVERYONE. If I haven't said so lately, I love this place! It's so cool to be able to converse with follks who either know exactly how I feel, or can at least empathize with how frustrating it can be to have a really UNIQUE symptom. I also really like that I can turn my strange bodily knowledge into something useful for others. Kind of helps me feel like this wacky body history I have can be turned into something really positive.

Big smiles to you all.

Nina

Edited January 27, 2004 by MightyMouse

[DawnA]

Wow Nina! That is a lot of tests. Did they all come back normal? At least a diagnosis of gastroparesis!! I can understand your reluctance for furthur testing. I am happy to hear their are others who feel the same emotionaly as I do about testing. It helps me to realize that my feelings are normal and not a sign of weakness. I hate the waiting for the results and the fear of everything coming back normal. It is so emotionaly wearing. Normal test results is so common amongst us.

I am in the process of being tested for mito. All the tests have come back normal, which I hear is common for adults. I don't feel up to doing anymore testing. Not at this time anyway. But, I feel obligated to follow through for the sake of my children and other family members who are ill. I know of others who have exhautive testing for mito and were not dx until they had a fresh muscle biopsy. This process took them 10-15 years. I admire their strength, courage and persistance. It must of been so hard for them!

I am sorry you are having stomach problems with little relief. Not much worse than a bellyache. I hope you can find some answers or relief. That test Tearose mentioned sounds very interesting. I too, love being able to be a part of this site. It is nice to share and learn from one another. If I did not have this outlet I probably would of gone along with the psychiatric diagnosis and would be all doped up on meds, drooling and staring into space.

Take care,

Dawn

[MightyMouse]

Hi there Dawn. Yep, I was told I have very slow motility (gastroparesis). Also, each of my more than half-dozen upper endoscopies shows multiple gastric eroisions, inflamatory and focal gastritis, sliding hiatal hernia, pre-pyloric edema, duodenitis, and biopsies are always H. Pylori negative. Blood work is usually only significant for elevated ANA, stains pink & speckled (Michelle and I share that feature). Ocasional elevated sed rate. Have a cyst on one of my kidneys but that's not changed in years and years.

CCK HIDA scan is what resulted in my gallbladder coming out: ejection fraction at less than 30% with delayed emptying of what was being put out by my wizzened little bladder-OH-gall. Basically, more than 70% of the bile was backing up into the ducts and really hurt like *&%$. Once that was out in '95, I had a blissful year of no tummy pain. Was DELICIOUS.

Since '96 I started to go through cyles of intense nausea and pain, which tend to die down to just an annoyance for months and then flare up for months. No clear onsetting or offsetting events...

Levsin does work at slowing down the spasms and turning down the pain factor to be tolerable enough for me to function--even if I have dry mouth and am a little groggy, I'll trade that for pain.

Thanks for listening to all my ramblings! Nina

[MightyMouse]

Oh, and with my blood work, the last one had a slightly elevated CO2 (31)...and I have perpetually elevated cholesterol, but my ratio is quite good (my total cholesterol is 380). Been seen by a lipid specialist who told me my ratio is one he wished he had himself. I have lots of HDL, the good stuff, which is like draino for my veins and arteries. At least SOMETHING i've got is superior to the normal folks!!!

Nina

[geneva]

The first 8 months or so when I got sick I found that every time I went to a doctor they ordered some test(s) and as everyone here has said they would come back normal which is GREAT except we were no further along in knowing how to treat me successfully. I felt the doctors wanted to help but were clueless so they would just continue to order tests just to appear helpful. At one exhausted point I said to a friend who drove me, "when will this medical carousel end?" and she looked at me and quietly said "when YOU say so". That was a truning point for me.

And like others I sometimes go on strike too. When we moved and I had to get a new doctor he thought I should redo all my tests. I agreed to some but not others. My question was always the same, if I take this test will the results impact my current treatment plan? Amazingly, the answer was more often NO!

Nina, good luck working through this period. I also take Levsin and find it very helpful. I admire you because I could never manage the stress you have in your life working F/T and going to school. Also, I am in AWE of you, because when you post all the medical details I think, boy am I really stupid! because I feel like I am reading a foreign language!!! Even if I KNEW the details of my case, I could never remember after leaving the doctors office (LOL)

[MightyMouse]

Geneva--I suppose being sick my whole life has required me to be my own medical expert. That, or I'm a MD wannabee

BTW, sometimes I get carried away with the jargon and acronyms. Anyone here who wants me to explain further, just ask. We're all at differing points on this path...I still need to ask questions too.

Nina

[Guest Julia]

Nina,

I was thinking about this one day. I'm wondering if a lot of us have gall bladder issues because of the slow motility in our guts caused by ANS disfunction. It seems like our gall bladders take quite a beating due to waste sitting in out bellies too long.

This is a wild guess I know---but makes sense. My gall blader is still with me. At the beginning of my POTS diagnosis I had many GI tests as well. The hyda scan showed that my gall bladder works 60 %. That was in Jan. 2001. I know it's only a matter of time before it's rotted enough and will need to come out. I'm trying to buy some time---so I can get this other junk with my spine/brain stem sorted through. Dr. Heffez is working with me---but I have not been woking with him too well---I guess I just don't want to know the answers.

MY bowel motility is so bad now---I can't go on my own. They took senocot-s off the market---and that is the only thing working for me at the time. Tried the Zelnorm---works------but the side affects were bad. I look pregnant most of the time! Far as I know---IBS is my only problem---or slow gut motility.

It sounds like you have been through a lot with your digestive problems. I can't imagine the thought of another test. I hope this is just a bad spell for you---and it goes away. As for me---I just want my bowels to work. I virtually never get nausia---so I feel blessed there. You would think I would with such slow motility---but I don't. Just bloat---and discomfort.

I hope things get better soon.

Julie :0)

[genie]

I too feel like I'm a MD, cardiologist etc.. my friend and I joke with our families about that fact. I am lucky, or chose, doc's that are not scared of my researching what's going on. They have lots of patients and I have only one of me. I do take my list of questions in, cause the memory fails most of the time, but my doc appreciates the fact that I have researched med's test etc and suggest them. I was also told I have IBS, sometimes feel that's a catch all for "we are not sure" but... I was having such bad tummy and low back pain and have to say I did start the antibiotic and amazingly, am feeling better, back is about 90% better, so hey maybe the doc knows something :-) I always joke that that is why they call it "practicing physicians" cause they practice on you :-) Still having some tummy issues but will follow through and may asked about the MRI that was mentioned, that's why this site is wonderful, we share info!!!!! Thanks!!

[MightyMouse]

Just a couple of things on this topic...(can you tell I'm procrastinating with my homework??)

A physician is nothing but a consoler of the mind.

[Lat., Medicus nihil aliud est quam animi consolatio.]

-- Petronius (Petronius Arbiter)

Source: Satyricon

The art of medicine consists of amusing the patient while nature cures the disease.

--Voltaire

Nina

[genie]

That is great! I will be passing that along to my friends :-) Thanks I needed that tonight!!! :-)