• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
mando621

Endoscopy scheduled May 2 - any suggestions

12 posts in this topic

Hi,

 

I finally went to the GI and spend a whopping 5 minutes with him. He briefly spoke with me and asked me a few questions, and just about ran out of the room saying he would get his nurse to schedule the upper GI endoscopy.

 

I guess it is a good thing to know, but he didn't really want to even discuss other issues. I asked if it could be a muscle problem since it seems like my throat isn't working at swallowing in a coordinated way. He said if the scope didn't turn up something they would try the manometry test where they test for muscle strength as you swallow.

 

My physical therapist said I should see a speech pathologist and see about getting some tests from them.

 

It is so hard playing medical coordinator for yourself. I haven't seen my family doctor in over 3 years, and yes, I know I should, but she is pregnant and probably will end up on maternity leave before I can get an appointment. She wasn't much help when I mentioned the problem about swallowing 3 years ago. She sent me to a neurologist who just ended up saying it wasn't his area.

 

As to a rheumatologist. My health plan has one. I saw him already. Don't want to go back to him. Denied access to a rheumatologist outside of plan. Long story short - health care is frustrating whether it is public or private.

 

Well, I will be sedated for the test because I have to have someone else drive me home. The doctor will stretch the lower sphincter if it is the problem. I think the problem is higher since food sometimes ends up in my sinus cavities at the back of my throat. I have to tip my head up and relax the muscles in my throat and then I can feel the food go down.

 

Anyone else have similar issues?

 

Mando.

Share this post


Link to post
Share on other sites

Hi, mando. Just a quick response about one part of your message - you say you think it is higher as food ends up in your sinus cavity. The thing is, if you are having spasms at the lower part which makes it difficult for the food to go through, it will back up into the higher part - it has no place else to go.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I hope you can find a new Gastro and primary if they aren't willing to take time to listen to you. I just had an Endo (or EDG as they called it) while in the hospital last week and a colonoscopy yesterday. Hopefully they will be able to find your problem with the Endo. I was out in a matter of seconds, didn't feel anything and came to pretty quickly afterwards. They did do a biopsy so I had some cramping later that day and for a couple days, but only after I ate. Best wishes.


I may have Scleroderma, but Scleroderma doesn't have me!

Share this post


Link to post
Share on other sites

Hi Mando,

 

I too saw a Gastroenterologist last week as I am having issues with my bowels and also reflux which I may be aspirating into my lungs. I was surprised that she spent 40 minutes with me, taking my history first, then going back when I was a child and eventually leading up to now. I was very impressed, she mentioned that I needed a gastroscopy and that she would take a biopsy of my stomach to rule out Celiac disease as I am having bowel problems. I didn't need a Colonoscopy as I had one done 4 months ago.

 

I can understand your frustration though, a few weeks ago I had an appointment which I had waited 6 months to get to see a lung doctor.

I was in and out in 5 minutes and was told that even if something was wrong with my lungs, he would not treat me, it was up to my Rheumatologist!

I already had a PFT which showed my DLCO was declining, he still wasn't interested in investigating any further. So now I am being pushed along to the next doctor, my Cardiologist. He has been procrastinating now for 9 months on doing a right heart catherter to rule out PH. So I shall give him one last chance, to redeem himself, and if he fobs me off again, I shall seek a second opinion.

 

Good luck with your Gastroscopy, I shall be thinking of you.

 

Celia

Share this post


Link to post
Share on other sites

Hi Mando,

I definately have similar issues. The bottom portion of my esophogus does not work well at all and I have Barrett's esophogus because of all of the acid reflux. Often I get food that come back up and sits at the back of my throat. This past week I had a bronchoscopy which showed I have been aspirating because my bronchial tubes are damaged from reflux as well as the area above my vocal cords. Don't let the appointment get you down. Just get the scope done and see what they say. It will give them information they need to see what is going on.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

mando,

 

I know exactly what you are talking about... when it comes to gastros and being "short" on chairside manner.

I have had issues going on... for quite some time... and the gastro "questioned me" a bit on those issues, but quickly changed gears, by saying..."You might want to schedule an endoscopy and colonoscopy in the very near future". Go figure?! I must be a skeptic at heart, as I get really irritated with things such as these.... and here's why.

They do all of these tests on me, yet... if I'm having problems, such as I am right now... I'm told they can't do this and they can't do that... surgically, because I'm high risk. Here's my question: Then why put me through all of these tests... if they can't do surgery on me :blink: ?!

Sorry, mando... I'll jump off my soapbox now :rolleyes:

 

Hugs, Hugs...

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Mando,

 

I have had several endoscopies with them stretching the esophagus as well as having had a manometry last year. Not a pleasant experience but they were able to determine that my swallowing reflexes are terrible. I was also told after my first endoscopy that I will probably have to have one every year or so for the rest of my life. So I am learning to cope. But my gastro is only in the office to see patiendts one day a week. The rest of the time you have to see a physicians assistant, which I hate because she can never answer any questions. I have learned to insist on having all of my appointments with him. Meanwhile, my last bloodwork showed some irregularities in my hormone levels so they were referring me to an endocrinologist, but that was in early February and I have yet to have an appointment scheduled. They made it sound like it was urgent, but obviously not. We'll see. In the meantime, try to relax and wait for the results of your endoscopy. It will help put things in perspective for you.

 

Much love,

Kim


Much love,

 

Kim

 

 

Be yourself...everyone else is taken.

Share this post


Link to post
Share on other sites

Kaycee,

If I were you I wouldn't wait, I would schedule that appt on my own if you can.

 

My first rheumatologist said he would refer me to a pulmo when my chest Xray was bad. I waited and suffered with severe shortness of breath 2 weeks, then finally called his office since I hadn't been notified of an appt. I was then told: "Oh you have to do that yourself through your primary doctor" I was so mad, because my lungs were getting worse each day. I got my referral sheet faxed it to the pulmo, & got my appt, but over 4 weeks away!

 

I called & spoke to a very nice nurse and begged for an earlier visit. She said if I got my Primary & Rhemy to send records over the Dr would review and perhaps squeeze me in. I went and got my own copies and hand carried them to the pulmos office. The nurse called me the next morning & I saw the Pulmo later that week. From then on I realized I have to be in charge of my healthcare.

Share this post


Link to post
Share on other sites

I agree with Cheryle about being in charge of your own healthcare! I also think one of the best things you can do for yourself is to find excellent doctors -- and then you still need to keep an eye on them!

A good friend, who is a doctor, has nagged me to get a good primary care doctor who is in charge of my whole case. All records from specialists should be copied to the primary care doctor and he or she coordinates your care and tells you who to see and when to see them and interprets some of the tests for you,

I am working on this, but haven't quite accomplished it yet. I have finally found a pc who I think is going to work. She's friendly and interested, she listens and doesn't seem to be in a huge hurry. She seems to know a thing or two about scleroderma, although that remains to be seen. However, she seems willing to learn and to look things up.

It does make sense to have a doctor who knows your whole history and knows what other doctors you are seeing and has copies of all your records.

I asked my rheumatologist what she thought about my friend's adfvice and she said, "It's a good idea, in theory." She went on to say that at that particular time, I had "a lot going on." I was about to go to Southwestern Medical Center in Dallas for a bunch of testing for pulmonary hypertension and any heart problems. At the same time, I had a calcium deposit on my knee, which included red streaks running down my leg. I think her point was that, at that particular time, I had more doctors' appointments than I could cope with without adding a quick trip to the primary care physician!

Since then, I've completed most of the tests and I did go see my primary care physician about the calcium deposit (for which my rheumatologist had already put me on an antibiotic) and I asked Southwestern to fax the primary care physician and the rheumatologist all my test results.

When it comes to sclero, though, most of my trust is with my rheumatologist!!! And when she speaks, I listen, and then I come home and read, read, read to make sure I agree with her!

 

Mary in Texas

Share this post


Link to post
Share on other sites

Hey! I just had an EGD on March 28th! Best day off I've had in ages :o) no side effects and a legit excuse to lay on the couch and nap on and off all day ...the drugs they give you these days are phenomenal!! Didn't remember a thing and apparently I was highly entertaining prior to being aware I was awake, LOL! Something about obsessing over the time every 2 minutes...for an hour!!! LOL! I had a biopsy as well but no cramping or anything afterwards. I swear I felt absolutely nothing but sleepy afterwards ... good luck but you won't need it!

Share this post


Link to post
Share on other sites

Hi guys! I go for my Bi-annual upper endo tomorrow morning bright and early...7:30am. I always have to have my espohagus stretched. I've never had a problem with having them. Like the others said, the drugs they have nowdays are great. I never remember a thing and do manage to finally get some rest during the day after I have one. :P


Peace :)

Barbara aka relicmom1

Share this post


Link to post
Share on other sites

I, too, do well after the EGD. I always tell them to give me enough drugs so that I don't feel a thing. And not being able to open my mouth very wide creates a big problem as they have a hard time getting the mouthpiece in but once it is, everything else is a breeze. I always have to have my esophagus stretched and they always find a polyp that has to be removed. So it is definitely a yearly thing for me. Now as for my healthcare, I rely on my rheumatologist for my care where the sclero is concerned but my primary care physician is copied one every thing I have done from every specialist I see, so she is fully aware of what is happening and is very good about staying on top of it. She is usually the one who calls with results of bloodtests ordered by other doctor's, again because she gets a copy of everything. I make sure of that. But then I make sure every doctor gets a copy of everything every other doctor orders. If they don't want the info, they can pitch it but I believe it helps them in their area to know everything else that is happening with my body. And I am very pleased with how well they all work together. I'm just a little annoyed about the referral appointment thing. I have appointments every day for a week starting Thursday so I'll give them another two weeks and if I don't hear anything, I will call myself. Thanks for all of the good advice and know that I do appreciate it all.


Much love,

 

Kim

 

 

Be yourself...everyone else is taken.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now