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Thread: GI Doc Visit

  1. #1
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    Default GI Doc Visit

    Sorry I'm slow on updating. It's been a rough week.

    The GI doc I saw was interesting. I went in only in the hopes of finding relief for my trouble swallowing. I ended up spending a couple of hours with a doc and his staff that were eye opening. I shared a bit about it in Amanda's good news thread.

    My feet are still on the floor this time! Firmly planted!

    I had hardly told him what has been going on and he began to share with me that his wife suffers with almost the same symptoms. And he began to lecture me about the importance of finding a good doctor. I told him I have seen three rheumys so far and am still looking. Two here in the area and one at Emory. That I've also visited a hematologist, neurologist, immunologist, and I'm still miserable. He mentioned a rheumy he knows in TN. I told him my grandmother saw him last year and was really impressed with him. The kind of doctor that really feels his patient's pain and loves to make you feel better. It took him a while but he got all her pain under control. But he's not on our PPO list. I called and asked if they would do a payment plan with me but was told I'd have to pay the full amount after the visit. I can't afford to do that. The GI doc said he'd write the rheumy a letter since he knows him personally and ask to talk to him about it.

    He said he also knows another particular rheumy that I saw. I didn't like her bedside manner or how she only threw plaquenil on the treatment plan even after I explained to her how bad the pain is. He said he wonders if that was when she was pregnant, maybe she was just crabby. He said he would write to her also if I wanted him to. Maybe he could talk her into giving me better treatment.

    He knew the first rheumy I had visited too and we both agreed he's a waste of time. lol.

    I'm not even hopeful about any of it. I'm just going on in life as if it never happened just in case this is another flop like the immunologist. Which they never called to let me know about the appt with the new rheumy the immuno wanted me to see. I'm not calling and asking about it either. I'm also not going to go have the expensive HAE tests she wants me to have done. I've decided to put that off or perhaps not do it at all. I've already got a couple of expensive blood tests to pay for and that she and the pro she talked to over the phone about it both think I don't have HAE, what's the point, you know? If anything externally swells on me, I think we'll have our answer about that one. I think the deficiency was just something found that accompanies AI disease/s. I don't think it means I have HAE. The hematologist that argued with me about that was wrong. Lupus, and other AI diseases, do run hand in hand with deficiencies like those but rarely turn into HAE. The immuno helped explain why and I believe her. It makes sense along with articles I've read about it.

    I go Tuesday for a barium swallow and the GI doc will decide from there if he wants to do the scope. He also wants me to swallow a "pill" and let them watch it go down. I've never had either of these tests done. Anyone here been there, done that? What's it like?

    He told me he's been in the business in the area for thirty somethin' years and he knows a lot of doctors. He also said he understands what it's like going through this, since his wife knows it personally. He had some funny opinions about rheumys that got some chuckles out of hubby and I. I shared some of our rheumy jokes and he appreciated them. lol. He talked about fibromyalgia with me and told me that ibs is simply fibromyalgia of the intestines. He did give me a script for a different med for that to try...told me the ones I'm on are old and yes there are better meds for that. I thought so! He was nice. A very humble person. When he walked out of the room he said he's a strong believer in prayer too and if I wanted he'd pray with me about it. But all I'm going to allow myself to get excited about right now is getting this swallowing problem relieved. If he can get me in with the nice rheumy that will be nice. If not, no tears. I know I need to find a good rheumy, but after this long ride, I'm taking a break from looking. If the GI doc can pull some strings, great. If the cold rheumy he knows can be talked into treating me, great...she doesn't have to be cuddly, just treat me. But I'm taking a break from the rheumy hunt for a while. The immuno fiasco has knocked the wind out of my sails for now.

    I wore my sunglasses that cover all of my eyes...I stayed out of the sun almost the entire trip there and back...and I still got a migraine!!! I got it while on the way home from the visit. Yesterday the same thing happened on the way back from the grocery store. I think this photosensitivity thing is getting worse. My skin isn't so sensitive, (no rashes or blotches) but it's like my eyes are made of tissue paper lately. It doesn't take much to set off pain and a migraine always follows. I'm getting really weary of it. If I laugh, cough, sneeze, etc...a bit too much or too hard, the eyes start to hurt then too...and it usually brings on a migraine also. Ugh. I think it's time to ask for another decadron shot!

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    hi abbasgirl,

    if you are interested, i can give you my rheumy info....she is in atlanta accross from piedmont hospital. i really like her. She hasn't had a baby in 13 years, so i don't think she is the same one that had questionable "bed side manner" and who "just prescribed plaquenil". She did first put me on Plaquenil, but also gave me a medrol injection....that got me out of the flare, but the shot was expensive. The pills are covered by insurance, but my insurance company said that the shot was considered "a hospital visit"....i don't get that one, but that is their story.

    i am so glad that you met a compassionate dr.....i hope he follows through with his promises to get you some help.
    Phyllis

    share a smile today

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    [QUOTE=abbasgirl;60625]
    I go Tuesday for a barium swallow and the GI doc will decide from there if he wants to do the scope. He also wants me to swallow a "pill" and let them watch it go down. I've never had either of these tests done. Anyone here been there, done that? What's it like?

    It sounds like the Smart Pill is what your doctor wants to order to see how things move through your digestive system. I haven't had it done because I'm part of a gastroparesis research study that has certain gests with certain protocols and the Smart Pill isn't one of them. Instead, I have a gastric emptying scan (GES) done at least every year, if not more frequently.

    Anywho, my understanding is that you swallow the Smart Pill (a little camera) and it transmits information to a little receiver that you wear as it goes through your digestive tract. You take the receiver back after a period of time (don't recall how many days) and they download the data from the receiver and can see long ot tales for food and waste to go through the digestive process. I would much rather have the Smart Pill than the GES because then I wouldn't have to eat eggs with a bit of radioactive material in it and struggle to keep it down so they can take xrays over a four hour period. I'm having one done next week and I don't even start the test until noon--which means I am going to be really hungry 'cause I can't have anything by mouth after midnight

    It sounds like you got yourself a winner of a GI doc. My rheumy isn't contracted with any insurance companies because she doesn't feel like they should dictate how she should practice medicine. Her visits are typically $225.00. Because she's not contracted, the PPO carrier reimburses me some $88.00 per visit. The rest I pay out of pocket. To me, it's well worth the cost because I have confidence in my doctor and I don't see her but a few times per year. A PCP under these circumstances would be cost prohibitive, but you might re-consider for a GOOD specialist.

    Thanks for keeping us updated on your visit. Take care.

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    Oh Abbas girl,

    We will be there with you at your appointment.Imagine as you take the meal,imagine .....and we will all be there with you.Dont think of anything else but chocolate.And i so hope that nice doctor does write and pull a few strings for you and you eventually get a caring doctor who sorts you out once n for all. I hope the one Phyllis is offering can help if that doctor is near you.I will be thinking of you and just remember....your luck will change for the better soon,just keep believing that and keep us updated on how you are my friend.

    Love n gentle hugs
    Amanda.xxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Hey there sweet Phyllis! You gave me your doc's information a while back...there are so many of us here that you take care of and love on that you forgot that...it's okay. ((((Hugs)))) It's too long of a drive for me to get down there still. The gi doc was talking about the last rheumy I visited up here. Sorry 'bout that. She was rheumy number two. The emory doc was last of all the rheumy visits. The one I'd like to see, my grandmother's, is in hixon so that wouldn't be too long of a drive to visit a rheumy I know is going to be helpful. I wish I could see your rheumy...she sounds so nice! But trips to Atlanta can't be made anymore. Well...for now. I still have hopes of visiting Atlanta again period...so much to see and do there! And when I do maybe we can finally meet up for lunch. Insurance companies are getting weirder and weirder... good grief...our systems need overhaulin' so bad. Hospital visit my foot!

    I hope the GI doc helps too...but if it doesn't work out, eh...I'll be okay. My only expectation now is to swallow normally again. I wonder if he can dx sjogren's. I just now thought of that.

    Thanks for the insight, BonusMom. Bless your heart...the GES sounds absolutely horrid! (((((BIG HUGS)))) When do you have that done? I'll be thinking of you and praying it goes super easy on you. That has got to be hard on the system and so VERY uncomfortable!

    I'll take a good specialist over the pcp care anyday...it's just finding one. It's great your insurance reimburses you ...it's not a big amount but it's something. Mine won't do squat. Even if they did reimburse me some, I can't come up with that kind of money except to pay rent and bills with. My grandmother's doc said he tries every year to get the contract with our group insurance but the crappy rheumy (the first one I saw) beats him out of it every year. I wonder who I can complain about that to? Oh that's a badly worded sentence but for the life of me I can't get past my foggy head to find a better one. Lol.

    So the pill is a camera...hmmm. I wonder if my whiney insurance will cover that...it sounds expensive.

    Amanda...(((((hugs)))) I think I'll do okay...it beats a colonoscopy. Lol. That's what I keep telling myself. I'll keep you all in mind and appreciate the good thoughts and prayers. I'll also think about our beach get a way. Your new avatar is so cute!!! It's good to see you in it and smiling!

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    i think it sounds better then a colonoscopy too!
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    It's always great when you find a sympathetic and empathetic doctor. I'm glad you GI is willing to help you in your Doc hunt. Hope all goes well with all your tests.
    Spanglishqueen AKA Brenda or "B"

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    Yesterday was the test. I found out that the pill isn't the smart pill after all. It was a barium pill. So it was barium "milkshake" and then the pill, and then more barium milkshake. Before all of that, I had to drink a small cup of effervescent stuff that tasted like a salty VERY CARBONATED Sprite and then asked not to burp...lol.

    Sorry I'm slow on keeping up again. Every doc appt. lately keeps me in the bed for a while and yesterday, well... I can sum it all up in one word... EW!

    Today is a little better but I still feel so very out of it.

    Good news though...the doctor who performed it said he saw no masses or narrowing so that's a relief. He said my gi doc will probably want to do the scope next though since they could see the trouble going on, but can't tell what is causing it.

    So I'm on standby about what he wants to do next. I'm also still waiting to hear about the rheumy situation.

    BonusMom...have you had the GES yet?

    Love and miss ya'll! XOXOXOXO

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    hi abbasgirl,so sorry that you had to endure that GI test....you are right, EW.it is encouraging that they know what is happening to you, they just don't know why....at least that is a start.you rest, and take care of yourself.....
    Phyllis

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    no masses is good news! Hooray for good news!
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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