Barium Swallow Results
Posted 16 February 2007 - 04:28 PM
I called the hospital and they did have a copy but said they couldn't give me the results over the phone BUT I could pick up a copy. They have had the results for several days now........I am very very upset and will be letting my doctors office hear about it first thing Monday morning - and it WON'T be PLEASANT!!!!
So anyway - long story short - I picked up the results and it looks like everything is just FINE.
So now I'm wondering if my doctor will still call in a referral to the GI specialist since there is nothing wrong with the Barium Swallow test.
I know there is still something wrong with me and I feel I NEED more tests ran. Does anyone know how hard it is to have tests ran by a specialist if they don't have anything to go by? (besides my word with the symptoms I'm having)
I don't know if ya'll remember - but this is the doctor that said he spoke with the GI Specialist and was told that he couldn't help me if it was Scleroderma related....
Well - now that the Barium test came back ok.......I'm not sure what "I" am considered.
Posted 16 February 2007 - 04:50 PM
How frustrating! A lot of my GI tests come back normal (not the barium swallow, however) even when I have lots of symptoms. Luckily both my GI doctor and my rheumatologist know that something is going on and are willing to treat the symptoms regardless of what the tests show. In fact, my rheumatologist said, "Wow, it must be really frustrating to keep having the tests come back normal when you know something is going on". I was shocked.
Anyway, I think if I were you, I would print out some information on GI involvement in scleroderma and give it your doctor and tell him that you know something is going on and you need a GI doctor who has experience with scleroderma patients to see you and treat your symptoms. Unfortunately, it sounds like you are going to have to be fairly pushy with your doctor OR call your rheumatologist and ask them to refer you to a GI specialist (they might even know someone who has experience with scleroderma patients).
Good luck and keep us posted.
Posted 16 February 2007 - 07:14 PM
Posted 17 February 2007 - 06:05 AM
I agree with what has already been said. I also took the advise from someone in my support group which was to start a notebook and keep copies of all my labs, tests, etc. I take this with me to all my appts. This means I have to be proactive and a couple of days after I have had a test, etc. call and tell the office I intend to pick up a copy(if you live too far, have them send a copy). Once your primary care physician office knows you expect this, you won't have a problem. I'm sure I'm not one of their favorite patients(office girls), but I really don't care. I'm always very nice but insistent. It's unfortunate that it seems as if we can't rely on physicians to call us with results. Good luck.
Posted 17 February 2007 - 08:20 AM
How incredibly frustrating!! Now you do know that you'll call Monday to give them a piece of your mind and they won't be open due to the holiday - causing you more frustration!
Seriously, you will have a lot of tests come back negative - which really is a good thing. But what you need is a good relationship with a doctor that is willing to tow the line with you and keep fishing until they figure out what's what. If you don't feel like you are connecting with your doctor then you might want to try another one. Provider - patient relationship are so crucial.
Keep us posted.
Posted 20 February 2007 - 12:33 PM
I called to specifically talk with the receptionist to ask why they STILL haven't contacted me in regards to my Barium Swallow results. She totally blew me off and transferred me to the doctor. Boy - our conversation was NOT pleasant at ALL. He basically said he has done all he can for me by providing me with what I wanted (the Barium test) and since it came back ok then there was nothing more to do except take my Prilosec daily. I said - but I have Scleroderma and feel I need more tests ran (named a few) and he then began to tell me to shut up and listen to HIM - HE is the DOCTOR - not ME. We were yelling back and forth and it was not good. He said my first problem was that I was reading on the internet too much. And I said - ok - why have I lost 30 pounds in 3 months? I am still not gaining any weight.... my stools now have 'white chunks in them' etc. He did NOT want to hear a word I said......
So needless to say - he said he would still give me a referral and we hung up.
I am actually feeling a little better though - I'm somewhat getting my appetite back. I have 2 more days on the Cipro......so maybe it was a virus or something. But I still feel like I should see a GI specialist just to rule out any possible problems.
Posted 20 February 2007 - 01:44 PM
I am so sorry that you are having such problems with your doctor. Hopefully, this blowup will actually lead to you a great GI doctor and you can FINALLY get the help you need. I'm sorry - but a doctor should be concerned about 30 pounds in 3 months! That was one of the problems I had with the onset of my diseases. My pulmonologist at the time kept congratulating me for my weight loss between visits. I kept telling him "I'm not trying, I just can't swallow." but he still blew me off. Well, when I finally got a good rheumatologist and was diagnosed, the weight loss was one of his major concerns.
Keep fighting for what you know is the right thing to do. Sometimes it takes a while to find the right doctor (I'm on my 4th pulmonologist), but eventually you do. I'll keep my fingers crossed that this next one is the one. BTW - is this doctor your primary care physician or rheumatologist or other? Just wondering.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)
Posted 20 February 2007 - 02:12 PM
Oh my goodness!! Some in the medical field never cease to amaze me. You take the referral and run! Like Janey said, maybe the GI doctor will be a guru who will hit the nail on the head and be able to help you. You may also want to ask his advice about (if you feel you have good rapport) what physicians in the area he respects. You may be able to find a good doctor from that.
I'm just so sorry you are having to fight like this.
Posted 20 February 2007 - 02:51 PM
When I first became ill I lost 70 pounds in a matter of a few months! I could still swallow OK, but I didn't have any appetite, and what I could eat wasn't being processed properly by my out of kilter GI tract.
No doctors were particularly interested, and it wasn't till I had kidney failure after 4 years that an interest was taken in my nutrition. Now I see a dietitian regularly, and although I have managed to claw back 24lbs, I'm still underweight for my height.
I have also since learned that bacterial overgrowth in the small bowel can contribute to a lot of the malabsorption problem and weight loss. The overgrowth often starts from the slow passage of food through the gut common in scleroderma.
Have a look at the page on Bowel Dysfunction on the main website. There are a lot of items here which mention small bowel bacterial overgrowth.
I am wondering if you may be having problems with this overgrowth, as you say that your course of Cipro seems to have helped your appetite. One of the suggested helps for bacterial overgrowth is a course of antibiotics.
I think you would be very wise to get a new doctor! This one is not helping you, or doing you any good at all!
Posted 20 February 2007 - 05:57 PM
I've been living with a guy and we have come to conclude that he really can't quite handle my health issues. It will be nice to be next to my parents - but I hate the thought of being alone.....but that's another issue.
I just want to get my health issues under control and try to start 'living' a life again!!
Today, I called 13 GI specialists (that's all they have in Amarillo). And only 1 for sure takes Medicaid. I'm awaiting a call from this other one that I'm really hoping will accept me because he has experience with Scleroderma!!
I'm just totally amazed that not many doctors accept Medicaid patients......that's pretty sad!!
I really don't have any 'swallowing issues'......it's just that I don't have much of an appetite anymore. I think alot of it has to do with 'thinking about how I feel after I eat'. I'm so afraid to eat certain foods -and I'm still trying to figure out WHAT I can eat. BUT - I have been eating so that is good!! Now if I can just put some weight on!!!
I have been eating prunes each day and I feel they are helping with my BM. I'm just concerned with how they look now......not good.
I plan on calling my rheumatologist tomorrow and filling her in on all that has been going on.......tests, etc. Then maybe I can meet up with her to see if possibly my pill regime needs to be looked at?
I do have faith that things will work out for the best.....I just still can't get over how poorly the doctor (and his staff) have handled things. I am glad that I will no longer be part of 'their' practice ever again!!
Thank you all for your support and for being there for me.......and listening to me vent!!
Oh one more thing - so does having a good Barium Swallow test mean that I don't have Gerds? I have never been tested for it.....I just know I have acid reflux!!
Hugs to everyone,
Posted 01 March 2007 - 06:07 AM
Posted 01 March 2007 - 08:25 AM
Regardless of him finding anything itâ€™s a good baseline to have in my records.
I wanted to let everyone know that I appreciate you all sharing your experiences â€“ good and bad. Iâ€™m at the beginning of my journey with scleroderma and itâ€™s so good to know what to watch out for. Thank you.
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 01 March 2007 - 07:59 PM
I'm a little confused as to what he means by 'you having possible esophageal issues and not digestive issues'? I don't understand how the whole body works really.
Posted 01 March 2007 - 08:20 PM
Sorry to hear about all your frustrations with your doctor and his girls. I've been there, done that. Glad to hear you're feeling a bit better though.
Also sorry to hear about the reason behind your new living arrangement. Maybe a blessing in disguise? Glad to hear you will be close to your parents. Hope they can be a comfort to you.