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Follow up appointment with my Scleroderma expert.


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#1 marsha

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Posted 25 August 2011 - 09:05 AM

I am back from my second journey to see my Scleroderma expert. Posted Image. It was a great trip. I got answers on the itching that has been plaguing me. Apparently it is yeast, which he suspects is from the prednisone taper. For that I take some Diflucan and some jock itch cream and I'm almost back to normal. Other than that things are going as well as suspected.
With the most wonderful summer behind me, I came back to Maine to the lovely symptoms of Raynaud's once again. :emoticons-clap:

I have had one symptom that started this summer. I seem to be getting food stuck at the upper end of my esophogus. It is mainly things like grapes, tomatoes and cucumbers. Well, that is when I'm noticing it the most but it happens with meats also. I discussed it with my Scleroderma expert and he said it usually happens lower. Does anyone else have it higher up?

Well I'm going to get moving along. I'm off to pick up new medications with my fingers crossed that these give me some relief with the Raynaud's. I hope everyone else had a great and wonderful summer.
:emoticons-group-hug:
Marsh

#2 Shelley Ensz

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Posted 25 August 2011 - 10:37 AM

Hi Marsha,

I'm delighted that your follow-up with your Scleroderma expert went so well. We'll do a Sclero Happy Dance over it for you!
:emoticon-congratulations:
:emoticons-line-dance:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 25 August 2011 - 12:07 PM

Hi Marsha,

I'm so pleased that you've had such a good follow up appointment with your Scleroderma expert and that he's been able to set your mind at rest with regard to the itching. :bravo: I'm afraid I can't give you any first hand advice about the food sticking at the upper end of your oesophagus but perhaps some of our other members may be able to help you.

However, I'm joining Shelley in the Sclero Happy Dance for you!!

:emoticons-line-dance:

Jo Frowde
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#4 Amanda Thorpe

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Posted 25 August 2011 - 02:46 PM

Hello Marsha

Ain't it great having good doctor(s)?

I have gastro issues that come and go and one of them is the sensation that food long swallowed is still sitting in my esophagus, it can um, well be "recalled" hours after eating. Not nice but not my major concern for me...yet!!

Take care.
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#5 mando621

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Posted 27 August 2011 - 06:49 AM

Hi Marsha,

It has been a long time since I've posted or even visited the site. I'm dealing with UCTD and I have swallowing trouble. It feels like things get stuck high in my esophagus, but it is referred sensations. Even thought the stuff is stuck lower, it feels like it is right under my vocal chords. Your nerves in the esophagus don't work like those on your limbs. I had some licorice stuck yesterday and it got quite uncomfortable.

Mando. (Lori)

#6 marsha

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Posted 01 September 2011 - 09:28 AM

Lori,
Question... when the stuff gets "stuck" if you (for the lack of a word) bring it back up, you know when you make that sound so that the food comes up so you can spit it out :) does it come right up or is it too far down to get?? I can get the stuff back up easily, that is what is making me think it is high up; it's happening more often now and it seems to be any kind of food. It's driving me mad...
Marsha

#7 mando621

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Posted 09 September 2011 - 03:01 PM

Hi,

Well, I don't bring anything back up at least. At times it does feel like I can feel it finally head down! I'm having more trouble since school started. I'm not sure if it is just more stress making things worse, or if it is flaring. Anyway, I'm about to give up eating anything solid until after classes get done.

I bought a liquid supplement drink and checked out the ingredients. It isn't anything except sugar, corn syrup, oil, and milk solids. I think I'm better off with my own combination of yogurt and juice. At least I would be taking in real ingredients.

I am not sure it is worth calling the doctor. They already told me that there isn't anything to do about my swallowing trouble except diet modification, eat upright, eat small bites, chew thoroughly, and swallow carefully. I've had things stuck in what feels like my voice box, and I feel like I'm talking with gravel in my throat. I've had such a sore throat because of it. I am at a loss as to what to eat that won't cause a problem one way or another.

#8 judyt

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Posted 11 September 2011 - 03:16 AM

Hi Mando,
Just reading about your swallowing difficulties. I haven't had exactly what you are talking about, but a number of years ago I had some tumours in my stomach which were bleeding and the decision was made to remove that part of my stomach in a procedure which is usually used to control obesity. Afterwards I was confined to a liquid or soft food diet for some weeks.

First of all I was given a prescription for a pharmacy only liquid food which had everything you need in it, in the way of protein and vitamins etc. Then after a while I was able to move on to more solid things so I would take whatever it was that we were having for a meal, vitamise it into soup and drink it.

Now I take Domperidone to keep my stomach working.

Hope this gives you some ideas about what to try.

Warm Hugs from NZ

Judy T