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Update on Specialist appointment, no easy answers

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#1 mando621


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Posted 01 April 2009 - 01:24 AM

Hi all,

Many of you asked in other posts to keep you updated after my specialist appointment. I saw the GI specialist yesterday and it was a little frustrating, but somewhat helpful.

I was referred to the GI specialist because I'd seen a GI doctor locally for trouble swallowing. He had performed an endoscopy, manometry, and Bravo Ph test. Mostly, my esophagus muscles are not working like they should. I have hypomotility of the esophagus with occasional good muscle action. My local GI didn't think it really resembled scleroderma because he didn't see fibrosing of the esophagus. There was evidence of inflammation and the poor muscle action, but he didn't make a diagnosis. Rather, he referred me to a GI specialist in esophageal motility disorders.

After getting approval to see the doctor one time only through my HMO, I went in yesterday with some hope of hearing some type of diagnosis. I think that was expecting a bit too much, but it was interesting. The specialist had a resident working with him. The resident came in and spent about 40 minutes with me going over all my issues. Suprisingly, he asked me if I'd ever heard of CREST. YES! Finally someone is putting this together is my thought. Well, let me continue... The specialist finally comes in, and really this is something I should have expected, he is really only concerned with the dismotility issue. He did say that he would like to test for non-acid reflux, but my insurance won't let him order tests so I've got to figure out how to get that done. Anyway... he did go on to say that he believes that my problems with dismotility are the result of a connective tissue disorder. He didn't give it a name. I'm not sure what he will end up putting in my records and the letter he will send to my primary care doctor, I've got to request copies. I have an appointment to see my current rheumatologist later in the month.

My current rheumatologist feels that there is probably something there, but not likely scleroderma because he didn't see hard skin on my fingers. Since there is now definite evidence that this is not in my head, I don't know what he will say. At least my new primary care doctor said that often blood work doesn't show what is actually going on.

I'm one step closer to pinning this down, and yet I don't really feel any relief. How is it that the resident could see what is going on, but all the rheumatologists I've seen are unable? I wonder if the resident also worked with the rheumatology department at the university hospital, it would have been interesting to find out if he had worked with the scleroderma expert that is there. I saw a rheumatologist there, but her specialty is Lupus, so it wasn't a big help.

Well, this is long enough. Thanks for the patience to read through this and all your warm support.


#2 LisaBulman


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Posted 01 April 2009 - 01:38 AM

You are getting there.. unfortunately you have to take baby steps the whole way!! Keep on going. Hopefully soon you will be able to get the tests needed as well as a diagnosis so you can be properly treated. It is such a frustrating road to be on.

Lisa Bulman
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#3 Margaret


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Posted 01 April 2009 - 01:54 AM

<< he believes that my problems with dismotility are the result of a connective tissue disorder.>>

Hi Mando ,

My son started with esophageal dysmotility, + ANA, restrictive lung disease, loss of voice, & major fatigue BUT no skin issues or Raynaud's. The GI doctor figured it to be sine Scleroderma, but the Rheumotologist called it Undifferentiated Connective Tissue Disease. To me, from what I have read, they can be the same and depending on the severity, are treated the same. There is a new classification for Scleroderma (ladies, help!!!) that explains why one is put into UCTD as opposed to sine Sclero or CREST. Hopefully, your rheumatologist will get you on the right meds no matter what the diagnosis is.

Take care, Everyone.

#4 Buttons


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Posted 01 April 2009 - 02:33 AM

Mando, I'm glad to hear that you are finally getting there. It is such a long process and we all know how upsetting and annoying this can be.
Do take care

#5 Penny


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Posted 01 April 2009 - 07:25 AM


This was a big step and I am glad that someone is finally starting to piece the puzzle together for you.

My suggestion to you would be to look your regular GI Doctor square in the eye and state that you want the test for non-acid reflux. Don't make it a request, just state it as a fact. You have gumption to spare so I am sure that you can do this, and stating it as a fact and not a request might make the difference between the Dr saying "my assistant will schedule it and call you" and "let's see how you do in the next couple of months first".

Your post (and others) have made me think a lot lately about how the internet has impacted the Doctor patient role. Before we became a global community there was really nowhere for patients to go for information or support. Many that could have been diagnosed were instead left in a haze of limbo because information sharing was almost non-existant. Patients could not research their own conditions or look for clues as to what was going on in their bodies. With the advent of the internet patients can now research the tests they are getting, their test results and can find specialists for certain conditions. We can even look at how their patients rate them on quality of care.

I hope that you soon have the answers and the treatment you need to take control back over your life.

Warm hugs,

#6 janey


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Posted 02 April 2009 - 03:27 AM

It's so good to hear that some progress is being made toward a diagnosis. I think some doctors don't want to give your problems a name until they know for sure which is quite understandable. A wrong diagnosis could cause the patient stress as well as insurance and employment problems. So hang in there and hope that the testing and attention you are getting leads your doctors to the right diagnosis. A correct diagnosis results in a correct treatment.

Margaret mentioned a new classification for scleroderma. We have that article on a our Types of Scleroderma page. Here's the link and a short summary:

New scleroderma subtypes provide disease insight.

Undifferentiated scleroderma was defined as Raynaud's phenomenon and at least one additional major feature of systemic sclerosis in patients not meeting the full American College of Rheumatology criteria; such features include nail-fold capillary changes, pulmonary hypertension, puffy fingers, or scleroderma-specific autoantibodies.

Thanks for the update Mando! I agree with Penny to push for any test your doctor's think you need. Keep us updated.

Big Hugs,
Janey Willis
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#7 debonair susie

debonair susie

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Posted 02 April 2009 - 09:20 AM

Hi Mando,

Thanks for filling us in on your GI specialist appointment. I am slightly confused as to why the GI doctor felt he had to send you to a specialist in the same field.

It is terribly hard awaiting a "real diagnosis"...putting a name to the symptoms. It was 4 years and many, many diagnostic tests before I was diagnosed. Some here have gotten diagnosed sooner, some are still waiting -- at any rate, it is frustrating.

As for what the doctors put in your records, I believe care needs to be taken, in how reports are worded, in order for doctors, clinics, hospitals to receive payment. Therefore, as Janey pointed out, they don't want to rush diagnoses.

The thing that is of utmost importance, is that the symptoms are being treated.
In the meantime, I hope that you can get to a point of satisfaction soon, Mando.
Special Hugs,

Susie Kraft
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