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Today's rheumatologist appointment


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#1 WestCoast1

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Posted 02 February 2009 - 04:41 PM

Just an update on my visit with the rheumatologist today.

My skin is progressing, and more telangiectasia. So she says that my diagnosis goes from MCTD to Scleroderma. She has scheduled a PFT test and chest x-ray along with some repeat labs. She also suggested a "swallow therapist". That has to be the strangest thing that I have ever heard of. I didn't know that there was such a thing. She says that because of my severe GERD a therapist can teach me to swallow more efficiently.....okay sure. :blink:

One interesting thing that she told me was that 40% of patients walk into her office with "UMCTD" an about 20% develop a specific autoimmune disease such as RH, Lupus or Scleroderma.

Anyhow, I walked out of there with a different diagnosis and a little in shock.

Thanks for listening to me rant.

Hugs~
erin
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#2 Shelley Ensz

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Posted 02 February 2009 - 07:43 PM

Hi Erin,

I know you're still in shock, but are you thinking, "Aha, it's about time they finally figured out it is scleroderma!!!"
Warm Hugs,

Shelley Ensz
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#3 Amanda Thorpe

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Posted 02 February 2009 - 09:13 PM

Hello Erin

You sclerodermian you! You are officially a member of the club, we don't admit any old riff raff you know. So the number has now gone up from 3000,000 to 3000,001, you are officially a statistic. :lol:

This doctor you mention, is there a sign above the door that goes something along the lines of "give up hope all ye who enter here...?"

You went into the office one thing and came out another, at least you didn't get turned into a frog. :)

Take care.

Amanda
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#4 WestCoast1

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Posted 03 February 2009 - 03:36 AM

Ha, Amanda, I love the way you put things, and yes it's all true. I didn't turn into a frog....thank goodness!

Shelley, you are so right about that one. I wasn't shocked to learn about the "Scleroderma" because other doctors have mentioned it, but this was the first time that a rheumatologist gave me the diagnosis other than MCTD. And you are right ...it is about time.

I had lost most of my need to hear a diagnosis because my treatment could cover the gamut, but now that things are progressing, I am really glad for the diagnosis.

So today is a day just like any other, I don't feel better or worse, but just very happy to have you all along the way.

Hugs~
erin
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#5 Jeannie McClelland

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Posted 03 February 2009 - 03:57 AM

Hi Erin,

Welcome to the very exclusive Club!

In my experience, such that it is, the "swallow therapist" turned out to be a speech therapist. She had me tip my head forward and then swallow. I'm not quite sure what this accomplishes, but it seems to help.

We've got a page on Dysphagia which I also learned from the Speech Therapist means 'difficulty swallowing.' That's easy for her to say! :lol: There's one particularly good article called Dysphagia Diet 5 Levels Difficulty In Swallowing Diet that I found helpful. It's got more than just diet tips in it.

Best wishes and warm hugs,
Jeannie McClelland
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#6 Sweet

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Posted 03 February 2009 - 05:37 AM

Awww those lateral shifts sometime send us for a loop. I'm sorry you're getting more of the telangiectasia. I hope that you can stay on a somewhat "healthy" plateau.

Loves!!
Warm and gentle hugs,

Pamela
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#7 janey

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Posted 03 February 2009 - 05:45 AM

Let's see - progressively tight skin, increased telangiectasia. You obviously had already figured it out before your saw your rheumatologist, but like most of us, you need to hear it from the professional. It's not something anyone wants to hear, but isn't it nice to finally know what you're dealing and have your doctor know as well. I've always hated guessing games.

Like you, I've never heard of a swallowing specialist. Interesting. I did have a cardiologist give me the advice that Jeannie gave you - tilt your head forward when you swallow or cough. Apparently when we tilt our head back it restricts the opening to the esophagus and actually makes the lungs more accessible. Think about what you're suppose to do when you administer CPR - tilt the head back so the air can reach the lungs and not go into the stomach. So tilting the head forward sure has helped me a lot. The hardest part is breaking the old habit and creating a new one. UGH!

Good luck with your swallowing specialist and thanks for the update.

Big Hugs to you Darlin',
Janey Willis
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#8 debonair susie

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Posted 03 February 2009 - 08:34 AM

Hi erin,

Even though it's been a long time coming, I'm sure it is a relief, in just having confirmation of what you were quite sure of already.

You had the exposure, by knowing where to look for information.
I, on the other hand, did not have a computer in 1995, so the words "Scleroderma, Raynauds Phenomenon", etc...really threw me for a loop! It took me some time to digest it all.

As for the swallowing therapist...I can sure understand why you had the reaction you did have. Though I'm sure the techniques will likely help with the GERD, it's an interesting description for a specialist!

Take care of yourself, erin and thanks for letting us know.
Special Hugs,

Susie Kraft
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#9 Snowbird

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Posted 03 February 2009 - 11:21 AM

Well Erin, I've heard it say that it's always a surprise, even when you expect it, so it seemingly holds true. I find your stats interesting too. I read somewhere once that about 15% of autoimmune patients never develop further (so they never progress into an actual disease. They stay mild with few symptoms of whatever). Thanks for keeping us updated. Let us know how your new tests turn out. Take care!
Sending good wishes your way!

#10 canon

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Posted 03 February 2009 - 04:34 PM

Erin,

It is nice when the suspense is over. Glad you got an answer. Hope your tests turn out OK and you are feeling better soon.

With gentle thoughts,

Judy
A happy heart is good medicine.

#11 razz

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Posted 04 February 2009 - 06:06 AM

I had never heard of a swallowing therapist and was surprised to hear such an occupation existed. I did notice when swallowing pills the difference when holding my head forward versus backward. Thanks for this new info. One thing for sure, with scleroderma I'm always learning something and I'm never bored!

Hugs,
Razz
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