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Update from Gastro appointment


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#1 debz

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Posted 15 January 2009 - 04:13 PM

Hello everyone,

I had my follow up appointment with the gastroenterologist this morning. I had an endoscopy back in September and then in December went for manometry and ph tests. He had the results and it seems that I have reflux which I take Nexium for. The manometry revealed the lower part of the esophagus is not working when I swallow food. He didn't mention scleroderma to me but said that if I am still having problems with the feeling of food getting stuck (which it is) I would have my esophagus stretched. He didn't say that there was anything else that could be done for it. Is that right? I had questions I wanted to ask, but forgot once I was in there! I am to continue with my Nexium as it is helping the reflux. I am still no closer to finding out if I have scleroderma along with the Sjogren's, but that is alright, so long as my symptoms are being addressed. I feel a little in limbo land though as my old rheumatologist retired and I did think that the gastro was going to refer me to 'someone' depending on my results for these last lot of tests. I am not feeling let down or anything, just a little limboish :) I know you all know what I mean :lol:

I did get a new referral to an opthalmologist as I am overdue to have my eyes checked. I have been on plaquenil for sometime now- well since 2002. So that is my news. I still have all the other symptoms going on but I am not feeling any worse than normal with all of that. The only newish symptom was the feeling like the food was stuck. Better go, hope you are all keeping well,

hugs Debz

#2 canon

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Posted 15 January 2009 - 06:58 PM

Hi debz,

Hope you will find an answer for the problems you are having. They will stretch the esophagus if there is a stricture or alot of esophageal spasms. The nexium sounds right for reflux. Bring your list of questions next time you see him. Does he have to give a referral to you for a rheumatologist or can you just go on your own?

Will keep you in my thoughts,

Judy
A happy heart is good medicine.

#3 Margaret

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Posted 16 January 2009 - 03:25 AM

Hi Debz ,

Gareth had esophageal dysmotility when first diagnosed but after 3 months on the Plaquenil, his esophagus started working again. Is it possible to increase your Plaquenil dose before going to surgery to have your esophagus stretched? That would be the easiest, cheapest and safest route. If that doesn't work, then try the surgery.

Take care, Everyone.
Margaret

#4 debz

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Posted 16 January 2009 - 12:16 PM

Thank you Cannon and Margaret for your replies!
Margaret,
I have been on plaquenil 200mgx2 per day (400mg) since 2002. It did help initially with the joint pain etc. The reflux and swallowing problems compared with the joints/muscles etc are a more newer symptom. I am glad that Gareth's problems with swallowing have improved. I don't really relish the thought of having my esophagus stretched. The manometry findings clearly showed dismotility in the lower esophagus.

I am not sure Cannon, what is going to happen about a new rheumatologist - who will put all the pieces together! My old specialist did write a letter to the gastroenterologist who had mentioned scleroderma in the two previous visits. He didn't this time, but then he had to read over his notes to remember who I was....

If and when things get worse, I think I will have to get the general practitioner to refer me to another rheumatologist. I just feel a little let down by the medical profession at the moment. But that is another story!!

hugs Debz

#5 kiwimum03

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Posted 17 January 2009 - 12:03 AM

Hi Debz!

Thanks for the update, sorry you are still in Limboland though, there seems to be alot of us there.
I hope the Opthamologist appointment goes well.

Hugs,
Irene

#6 Snowbird

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Posted 17 January 2009 - 03:10 AM

Hi Debz

Hopefully the medication will work and you won't need the surgery? Yes, I also think you should definitely have a good rheumatologist too....it's important to keep on top of the things going on with you. Take care.
Sending good wishes your way!

#7 Peggy

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Posted 17 January 2009 - 02:47 PM

Keep pressing on and going to a good rheumatologist who knows sclero until you get a definitive diagnosis. It took me a year going from doctor to doctor before I was finally able to get to the bottom of what was going on. The entire time I knew something was wrong and thank heavens I was able to finally have a doctor who was determined to put the puzzle pieces together. Since then I have now been diagnosed with 6 different autoimmune diseases and I'm being treated for all of them. If I hadn't gotten the diagnosis who knows where I'd be. You have to be your own advocate and fight for yourself. Please let us know how you are doing.

Warm hugs,

Peggy

#8 mando621

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Posted 17 January 2009 - 03:42 PM

Hi Debz,
I think we are on the same track again. I just had another endoscopy with manometry and Ph test ( Bravo). I met with the GI doctor, and he is puzzled about what my issues are. I have swallowing function when I just swallow at least a minute apart, but if two swallows or more are within 30 seconds of each other, I get one good swallow and the other doesn't do anything. It doesn't look totally like dismotility at first. Funny thing is that the Bravo test didn't find any GERD issues. I have feelings of heartburn, he thought it might be spasms.

Anyway, he is going to be calling a specialist through the university hospital to find out what they think and maybe get me a referral to the specialist. The barrium swallow showed a slight delay in getting food down, but they always waited awhile before having me swallow again, so they didn't see the problem.

The nurse said my skin on my wrist was tough getting the needle through, same as last time.

I hope you are on the way to finding answers.

Mando.

#9 canon

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Posted 17 January 2009 - 06:02 PM

Hey debz,

The medical profession can let you down sometimes. When the let down is on a consistant basis then it is time to move on to someone who cares at least in a professional way, meaning doing what is at least prudent and acceptable treatment wise per problem. If that is being done then there is some caring involved. I would say if the old specialist said you had probably had scleroderma then I would not dismiss it and find a Rheumatologist. Keep going especially if you are having problems.

I have had the stretching of the esophagus done when I was younger (many years ago) and it was done during an endoscopy then in the doctors office. It was not the nicest treatment I have had done but not the worst either. Have a friend if you can drive you home. Sometimes they prefer to use an a medication that may make you tired. Take care debz.

With gentle thoughts,

Judy
A happy heart is good medicine.

#10 debz

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Posted 18 January 2009 - 12:22 AM

Thanks Kiwimum, Snowbird, Peggy, Mando and Canon for your thoughtful replies! This gastroenterologist is really lovely and the first two visits were great, even this visit was good, although he didn't remember me at first and he did refer to some notes. I do like him and will continue to see him. It is just that he is looking at the gastro problems and I do have numerous other problems including joint/muscles, skin and swelling (fingers and lower legs/feet) also Raynaud's. He didn't address any of those problems and I have been diagnosed as having Sjogren's syndrome, so he did refer me to a new opthalmologist as my last one has gone interstate. I do feel a little abandoned as my old dear rheumatologist retired and I haven't 'found' another (I was under the assumption that the gastro doctor, or my old rheumatologist would be doing this - I guess I was wrong) and it will mean going to the general practitioner (who is useless - a bit harsh - more clueless when it comes to autoimmune anything!) which I will have to do eventually. I seem to have been running around in circles the last few months with doctors so I think I need a breather!

Mando, yes, yes, I can relate to a lot of what you have going on. My swallowing problems occurred each time I ate anything solid, but wasn't too bad with liquid, so it is confusing for me. My GI doctor wants to see me in July to see if things have improved with the swallowing - but what do I do in the meantime. Nothing has changed really, I am still having problems and I do drink a huge amount of water each time I eat anything. I don't know about the stretching - it is something I will wait an d see about.

Great to hear from you Kiwimum - yes limboland is a weird place still hahaha!!

I will keep pressing for answers (thanks Peggy - I do feel the same as you) I know something is really wrong but it is like a jigsaw and I am amazed that no one has said 'da da it is obvious you have this' - nothing is that simple hahaha :) Take care everyone!

Hugs Debz

#11 kiwimum03

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Posted 21 January 2009 - 12:08 AM

Deb,

Its good to hear your update, I have been thinking about you.
I haven't posted for quite some time, but do pop in to read posts when I get the chance.

Like you my fingers are terribly swollen, just been to the doctor today who is sending me for an xray, I don't expect it to show much except soft tissue swelling, but some days it feels as if all the bones in my hands are broken!

take care, and keep us posted.

Hugs,
Irene

#12 Jeannie McClelland

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Posted 21 January 2009 - 11:34 AM

Hi Debz,

Hey, if the doctor thinks that having your LES (lower esophageal spincter) stretched/dilated for stricture needs to be done, don't worry too much about the procedure. You know the prep for the endoscopy? Well, you/they do all that and then dilate the stricture while you are under. I had to have it done several times and the worst thing was one very sore throat the first time. I don't remember a thing about it, otherwise. :) I do know it was kind of dumb scheduling the first one for the day before Thanksgiving, but I really wanted to enjoy the kind of things that stuck before the stretching. :rolleyes:

Best wishes and warm hugs,
Jeannie McClelland
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#13 eah

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Posted 21 January 2009 - 05:43 PM

Please don't worry about the throat stretching. I have had it done many times. They usually put you under and outside of a sore throat and being tired after the procedure, it really is not that bad. There are some risks that very rarely occur, but if you have it done by a gastro who is experienced, you shouldn't have any problems. It is not a permanent fix. It does come back, but it does help for awhile. Good luck.

EH
ANN

#14 debz

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Posted 21 January 2009 - 11:09 PM

dear Irene, Jeannie and Eah,

Thank you so much for your replies! I will have the esophagus stretched if that is what is required, but I don't go back to the gastro until July, so have a bit of time to see how everything goes.

Irene, I had an x-ray taken of my hands about a year ago now and it did show effusion in the fingers. Mind you the general practitioner didn't really make any comment about it and said that there was no sign of rheumatoid arthritis. The thing is my specialist had ruled out rheumatoid arthritis back in 2002 when I first went to him! It is a little bit frustrating when you don't get definitive answers, but when things are not 'screaming out' at these doctors, I expect it is considered mild and therefore is going to take a little bit longer to properly diagnose. I wish you luck in your continuing quest!

Jeannie, the idea of having your esophagus stretched so you could enjoy Thanksgiving, sounds like the perfect answer to me hahaha :) Sometimes I wish I could eat certain foods again. It is funny how you tend to steer toward food that goes down very easily, it almost becomes habit! Again thank you all for your replies!

Hugs Debz

#15 debonair susie

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Posted 22 January 2009 - 12:37 PM

I so hope the esophagus stretch works well for you, debz...it truly is frustrating when restrictions must dictate how/what we eat.

Please keep us posted on how you do, once this procedure is done?
Special Hugs,

Susie Kraft
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#16 debz

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Posted 22 January 2009 - 05:02 PM

Thank you Susie,

I will see how it all goes, hopefully, there won't be too many issues between now and when I see the gastro again in July. We will discuss the stretching then.

Hugs Debz