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GI RESULTS plus visit to rheumatologist

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#1 jenee


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Posted 27 April 2009 - 12:19 PM

Hi Guys,

Well I just came back from the rheumatologist, and I had the GI (gastro intestinal) Upper Endoscopy about a month ago.

The endoscopy revealed that I have erosive Esophagitis Grade Two, several areas of erosion in my stomach and a ulcer in the antrum of my stomach. I am taking a PPI (proton pump inhibitor) now called Zegerid. I wasn't too alarmed about the results until the speech lady :) The ulcers are from, I guess, taking naproxen during my period? Perhaps my stomach is sensitive, who knows?

He suggested I not take the naproxen but my menstrual cramps are too bad to avoid it, or else I would. I don't take naproxen for the joint pain.

I also did a swallow test to see if fluid were getting into my lungs, that was clear, so that is good. I told the speech pathologists about my results from the endoscopy and she freaked me out, saying that is not normal for 34, that's normal for someone in their 80's, etc. She said my upper esophagus looks stiff but given my endoscopy results that is what she would expect to see. I am no longer freaked out :) -- that just lasted a few hours.

I go back for a follow with the GI doctor on June 18 and I will insist on a manometry. What else should I ask the GI doctor?.

Anyhow, I went to the rheumatologist he checked my Raynaud's checked one finger capillary and said he saw loss of capillary.

Brilliant me got a microscope camera and made a photo of my other finger nailbed, I showed that to him, he said he has never had a patient do that. I thought it would be good to have just in case he didn't think to do one, and thought he might appreciate it.

He said that is what he saw on the other finger and we had a little conversation about doing the nailbed exam, that he feels it is really good tool to use.

He asked a slew of questions, noticed I was a little hypermobile. I showed him the GI results but he didn't seem too interested, I don't know, but I think he noted it. He definitely wasn't freaked out by it. He said you were taking naproxen so that the esophagus damage could be due to the naproxen, so like I mentioned above, I guess the GI doctor needs to do more tests.

I would love to go back to not menstruating.

He also saw one Telangiectasia thing on the back of my finger that I can't see and pointed it out to me, I should have showed him my upper chest, they are covered with the things now, but I forgot. I forget about the spots. :lol: Is this something I should mention? I also forgot to mention the ones on my lips. He thought the red palms went with the Raynaud's.

He looked over my skin for fibrosis I imagine and mentioned how he didn't see any Sclerodactyly which was good he said, I should be recording these doctor's visits.

Anyhow, he asked about miscarriage, etc, I did have one a long time ago, when I was about 23, I think, at least my mother thought it was. It was very early though I was about two-three weeks late and had severe clots, etc. I told him this and also said I wasn't really sure if I was pregnant, however I have always been johnny on the spot as far that goes and there was large amounts of blood and clots. I do not know, anyone here ever have a miscarriage? Is that what it is like?

But frankly I have been very careful as regards to getting pregnant, except for that one relationship I was pretty young. So I do not know if I could give birth normally. I do know that my sister has a few early miscarriages. My other sisters all have babies, the youngest did have preeclampsia which I understand is just high blood pressure.

My husband and I do not want kids so I will really never know this.

He asked if I had any clots, etc. I said no none found.

He asked about dry mouth, cough, heart, etc. and listened to my lungs.

Oh, he also ordered a Hepatitis Blood Panel because that had not been done and that could cause nail bed abnormalities as well due to cryoglobulins. I said fine, although the only surgery I have had was just two years ago at Presbyterian which is an excellent hospital. I asked him if you can get that from the dentist and he said no.

That was about it then he ordered tests :


Centromere Antibody, I think that goes with CREST

CCP AB Rheumatoid Arthritis he thinks this is unlikely but he wants to test for it.


Then he ordered things I have never heard about or seen

APAS order st, I think that is Anticardiolipin Antibodies

CLAB ? Anyone have this tested? and knows what it is

AP4-Interpt ? Anyone know what this is.

LA-PTT I believe another anticoagulant test

DRVVT another anticoagulant test

B2 Glyco A (relates to the Anticardiolipin test)

B2 Glyco GM

Oh, and the Hepatitis Panel.

I guess he is looking at CREST and APS syndrome.

He also explained to me that this would not be a quick diagnosis even if something comes back positive he wants more data.

I have a follow up appointment in a month, as a overbook patient whatever that means.

So, I am putting on my patient, happy hat and hoping an answer in the blood work at least pops up.

Overall, it was a good visit, I did catch myself though getting a little impatient and will have to work on that more.

Thanks guys


#2 Shelley Ensz

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Posted 28 April 2009 - 10:17 AM

Hi Jen,

It certainly sounds like you had some interesting visits! It also sounds like you have a good rheumatologist. Did they happen to let you know that its an average of 6 years for women to be diagnosed with scleroderma, and about 3 years for men with the same symptoms? Very few of us have gotten diagnosed within just a few visits, so really brace yourself for the long haul. Even enlightened patients dealing with knowledgeable rheumatologists can still have literally years to wait for a diagnosis.

Meantime, keep getting support because most of us find that the time awaiting diagnosis and when illness is onsetting is usually the very worst part of it all.
Warm Hugs,

Shelley Ensz
Founder and President
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 Cheryle


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Posted 29 April 2009 - 05:25 AM


I too, think you have a good doctor. Sounds like he is being thorough. I had the GI tests last year including the Manometry.
Yes, tell him about the Telangiectasia on your chest next visit. I write down things as I think of them, then when it's time for my appointment I have quite a list full of questions and symptoms to take with me.


#4 Shelley Ensz

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Posted 29 April 2009 - 06:08 AM

Hi Jen,

Regarding the telangiectasia, for scleroderma, they only "count" if they are on the hands and/or face and then only if they are along with other significant symptoms of scleroderma.

That is because there are many causes of telangiectasias, including common things like sun exposure and menopause. Plus, it is perfectly normal to have telangiectasia on the trunk and extremeties. I have hundreds of them on my trunk and they are of no concern at all as far as scleroderma or any other illness goes; it is the ones on face and hands that matter but not if they occur in the absence of other significant symptoms.

So, I'd tend to say that it might not be necessary to even mention the ones on the trunk to the doctor...HOWEVER, I am not a doctor, I have no medical training at all, and I even spilled coffee all over my old family health book, making most pages unreadable.
Warm Hugs,

Shelley Ensz
Founder and President
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.

#5 lizzie


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Posted 29 April 2009 - 07:34 AM

Hi Shelley , I was suprised to read that telangectasia on the chest didn't count. Think you better tell my rheumatologist. One of the reasons he gave for diagnosing me with scleroderma was the fact that in addition to loss of digital pads and mild sclerodactyly, I had a couple of telangectasia on my upper chest.


#6 Penny


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Posted 29 April 2009 - 10:11 AM

Thought I would drop in for a quick little note here...

I have telangectasia just about everywhere, face, hands, trunk, arms, legs... more whispy red lacy veins than 'normal' skin tone really. I saw a dermatologist and she said "you are light skinned, so it is not unusual".


It looks like they are testing everything they can possibly test for you and I hope that you get some of the answers you need to direct you to the proper treatment of your symptoms. It sounds like you have a good team of Doctors on your side so I will keep my fingers crossed for you.

I think that many of us could do with a "patient, happy hat" as you put it, because, at least in the beginning of the diagnosis process, the waits can be long and frustrating and it can take years before the "ah-hah!" moment.

#7 jenee


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Posted 29 April 2009 - 12:18 PM

Hi Everyone,

No, I was like Shelley thinking the spots on your chest is a normal variant but I will say something to him. It doesn't hurt and who knows it might speed up the diagnosis. There are alot on my chest.

I will also mention the ones on my lips and face.

Do any of you have these spots on the roof of your mouth, just curious?

I am not a fair skinned person, more medium tone I suppose, but I bruise and bleed easily so they could fit in with that.

The bruising has been happening since I was a teenager. I was tested for it in the military because I was black and blue literally. I think I was the only one in the military to be ordered to go the doctor :) Anyhow, they never found a cause and it didn't appear to be life threatening so that was that.

I think the point is we should mention everything no matter how insignificant we may think it is. Lizzie's case is a perfect example.

Although Lizzie I bet you the sclerodactyly is was what got you the diagnosis :)

Thanks Guys,