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Post by grammie on Aug 22, 2014 14:20:36 GMT -5
Hi, Just curious, anyone have issues swallowing with SD? Next week see GI...a new one since appointment with one of four yrs ago is too busy they tell me(have to wait 'too long' for appointment they say)....for primary care thinks the SD is in the throat. Having some swallowing issues. Just wondered if any one has/heard of that one. I hadn't.If it is the issue, going back on AP!!
thanks folks, grammie
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Post by nhnancy on Aug 22, 2014 21:55:17 GMT -5
Hi Grammie, yes I had difficulty swallowing in the beginning, it hit my throat, changed my voice, I am better now on AP.
It hit my whole digestive tract...from my mouth to my other end!
Hope you get some answers...keep your food soft!
Nancy
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Post by jeffn on Aug 23, 2014 9:55:48 GMT -5
Nancy is right there with this one! The E in crest is for esophageal, Part of my work up with Rheumy #2 at Mass Genreal was a swallowing study. Like Nancy my esophageal problems are greatly reduced thanks to AP. Part of my throat problem was due to reflux also I think. How is your reflux? I had some stomach involvement too with GAVE, that too has resolved.
Good luck at your appointment grammie.
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Post by christel on Aug 23, 2014 15:15:33 GMT -5
Ok, here's my medical reason for that swallowing problem. Scleroderma patients make too much collagen, and in the esophagus (which is full of collagen) that means that the motility (stretchiness and movement) is greatly affected, making it hard for food to go down. In my case, for example, I have no motility, which means I pretty much have to wait for gravity to move the stuff down. There are tests to check for the esophagus issues. Good luck at your appt., Grammie, and feel free to bring your questions back here, and we'll try to help you out!
Christel
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Post by grammie on Aug 30, 2014 19:54:01 GMT -5
Thanks folks. Swallow test on Thursday . I will let you know.
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Post by jeffn on Aug 30, 2014 21:00:59 GMT -5
My swallow test was not bad at all. The breathing test was weird though. Getting into a big plexy glass box was just strange and they had me breathe in patterns and I don't think anyone ever breathes in
like that in real life. The tech who administered the swallow test was nice with a bit of a sense of humor. the breathing study tech was a bit of a pill. That was probably some of the difference. Where do you have to go for your test Grammie? Back to Boston or more local? Let us know how it all goes. Did you ever have a baseline study done or is this the first?
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Post by grammie on Sept 7, 2014 20:03:26 GMT -5
Hi all, We went to MEEI for it. They do not think it is SD related for the esophagus is very narrow all the way down but particularly in one area just below the trachea. They think it is my back bone pressing on it which is causing it to be smaller. I see GI in another week and I'm going to question him on the idea of it being SD related.
In the meantime, I'm learning to eat more moist foods and not dense ones! One is always learning...right?
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Post by Nancy - South Jersey on Sept 8, 2014 22:25:56 GMT -5
What kind of "swallowing" test are you all having? My pulmonary doctor wants me to have a "Video swallow with speech pathology" test because when I eat, the food seems to go down the wrong hole, especially if I'm eating something that has crumbs (pretzels, nuts, etc.).
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Post by grammie on Sept 18, 2014 6:15:01 GMT -5
That is about what I had. No more crumb type things for me unless with liquid! Learning a drink with eating is a necessary part of eating. Also what soft foods really are. I have some good recipes which help. Eating is more enjoyable!
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Post by nhnancy on Sept 18, 2014 10:51:04 GMT -5
I also can not eat without having liquid, (preferably room temp water) at hand. I have an issue with breads, or too much bread!
I know dry mouth is one of my issues, butI am sure, the SD was in my throat, I saw was because there has been improvement in the hardened
areas. I do wonder about throat exercises? I just remember Dr. Trentham was BIG. on it, he couldn't stress ot enough to me. I think its to stop the
shortening of tendons, with hardening.
Grammie, talk to your Doc about it...:-)
Nancy
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Post by Nancy - South Jersey on Sept 18, 2014 19:29:47 GMT -5
nhnancy: What are the throat exercises?
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Post by nhnancy on Sept 19, 2014 9:54:12 GMT -5
Hi Nancy, check them out on the internet and check with yourDoc, thats what I did...! :-).
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Post by grammie on Nov 7, 2014 9:54:37 GMT -5
With the "new"way of eating I haven't had another incident happen so all that is good. BUT due to all the gagging I now have a lot of whistling in the lungs. So back to pulmonary, and now on an inhaler. He is the one that diagnosed the SD in the lungs before anyone else so I have full confidence in him. He said no to cancer and SD but due to scaring and other issues. So there is some good news!
Had several other health issues "pop" up so haven't been back to GI. Having shrunken four inches, it isn't a wonder my insides have changed too. Since I am eating okey, I think I have had enough dr. visits for awhile so will let it sit for a while.
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