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Not Sure What To Do.

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#1 ssakar


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Posted 22 February 2007 - 06:51 PM


I have really started feeling better the last few days......building up a pretty good appetite again too!! AND - having regular BM's.

So now I'm beginning to wonder if I really need to see a GI specialist at THIS moment? Actually I'm not sure what I would say....

I guess my main concern is I know that Scleroderma can affect your internal organs (which it has already affected my lungs). So I keep thinking if I was to have some type of 'over-all' testing done to see if it is going to any of my other organs then I would be satisfied.........but is there such type tests that can be done? I would appreciate any input ya'll might have.

Oh and I have Medicaid so not sure what they would pay for ...unless I have specific symptoms for a certain type test to be done?

All I know is that I would rather catch something in it's early stages if that is the case. Like with my lungs - I had no clue I had ILD because I really had no symptoms.....so that's kinda where I'm coming from.

Thanks for all your help,
ps - I've been holding off on making an appt. with the GI specialist because of all these feelings I've had the last few days. I called my rheumatologist and I still have my followup appointment set for April......but they said I could get in March 9th if I needed to see her earlier. I'm just so confused on what to do right now.......



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Posted 22 February 2007 - 08:34 PM

Hi ssakar, I am understanding where your coming from. I too am wondering about new things I have been feeling. I was on Medicaid before and saw my rheumatologist every three months. I would have blood work 2wks before each appt, so he would have the results by my appt time. I also had 24 hr urinalysis b4 each appt. I had PFT's done every six months. EKG every 3 months. Also had barium swallow and CT scans a couple times. Bone Density testing every six months as well. I've had all these tests done repeatedly over the last 3 years, but until I started reading these boards, never once did I ask about any specific changes. Never did I "read" any numbers, ANA? don't ask me... Titer, CPK, none of it had any real meaning to me. These boards have changed that. Before I found this place, I thought I basically knew all there was to know about this disease. Boy, was I wrong. I guess I knew and researched the basics, but that's it. I have already learned so much more from all of you then I ever did from books I've bought, info I've recieved, foundations and associations. I am forever grateful :) Well, that's about it I guess. Hope in some way this may have been a little useful.


#3 CFMBabs


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Posted 22 February 2007 - 10:46 PM

I remember having a scan but for fear of getting the name wrong all I can say is I was placed inside a machine which took images in slices! I actually think it was called a MR scan -- but I could be wrong.


My rheumatologist arranged this because she thought I had the beginning of lung involvement but I think the machine scanned the whole of my body during the procedure.
You could maybe ask about this the next time you see your rheumatologist. I too would like to know the outcome.

Best wishes,


#4 Sweet


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Posted 23 February 2007 - 05:06 AM

Hi Sakar,

I am so glad you are feeling a little better! But YES please keep your appt. with the GI person. Let them know what has been going on, get any tests they suggest etc. Even if you currently are not having any problems he/she may still be able to let you know what HAD been going on.

Best -
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 janey


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Posted 23 February 2007 - 05:10 AM

I would go ahead and make the appointment with the GI specialist. Even though your symptoms have improved, they did exist and could easily return. And you know how Murphy's Law is, the moment you decide to blow it off - here they come again.

In reference to other testings, there are lots of standard Medical Tests for Sclerodema. My first year was one test after another, but it was worth it. My doctors and I are always comparing the most recent test to the prior test to see any changes. The first thing my new pulmonologist did was pull out the last 6 PFTs, line them up ending with the most recent one. The downward trend in lung capacity, DCLO and a couple of other areas made it quite apparent that my lungs were worsening. This was in August and her comment was "If your previously doctor had done this in January, we could have caught this even earlier." UGH! So yes, the baseline testing is important. It's the only way to notice change.

I'm so glad that you have started feeling better, but I would still recommend seeing the GI guy. I hope the improvement in your health continues and stays!

Janey Willis
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International Scleroderma Network (ISN)

#6 peanut


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Posted 23 February 2007 - 05:21 AM

Hey Sakar,


It's always good to have a baseline and I think a trip to the GI would give you that baseline for your stomach parts. I too am finally regular after my first GI appt. Hooray.


You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 Heidi


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Posted 23 February 2007 - 05:43 AM

Hi Sakar,

I am really glad to hear that you are feeling better! I concur with everyone else...please do make that appointment and have some baseline testing done. As the others have all said, it is so helpful to have those baselines to compare against as the disease does or does not progress. My GI ordered a barium swallow (I had had a bunch of other tests with my other GI before this) and the comment he made to me was, "If nothing else I want a baseline to use as a comparison". Then he quickly added, "Not that things will definitely get worse.....". I read between the lines to understand that he expected with this disease for things to worsen.

Anyway...go, go, go!!!

Warm wishes,