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Gi Issues+ Blood Tests


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#1 Sharonvandee

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Posted 17 June 2007 - 11:31 AM

Hey Everyone

Everyday I try to convince myself that this disease isnt what it is or that it will go away or that some how the dr made a mistake, silly huh?

I started of with reflux whilst pregnant with my son now 20mths old and the reflux was that severe that I ended up in hospital many time with dyhydration. So after getting through that and the fact that bubs flat line at birth Dr said we would be right.

When I was still sick after recovery period allowed for c section they blamed severe endometriosis and did a full hysterectomy, when that didn't work they said I had an umbilical hernia causing the problems. After that I developed esophegeral spasm and worsening problem related to the reflux.

After a monometry test showed 150+ reflux in a day that specialist and general practitioner started to look at more surgery and I started to look for answer as well as these ongoing things I was cold in the hands and feet, losing my hair, had been diagnose with hughes syndrome, had whit calcinosis on two fingers, so the dr sent me off for lots of blood tests most of which are borderline or negative. Is this normal does it take time sometimes for these test to be all positive?

I am now developing hoarsness in the throat and dysphagia which has me down to only eating soup and some ice cream and other fairly liquid foods. I try from time to time to eat normally but am quickly reminded that that just aint going to happen.

In the last month I have had a problem with shortness of breath, which after trying all the asthma medication I have been placed onto prednisone.


Just wondering if there is anyone else out their that has travel a similar path as I have yet to talk with someone that has and in Australia I live in a regional area so isolation is a big bummer.

Anyone sorry about going on so long just trying to get my head around this.

Thanks for listening and providing the only link I have to others with this disease.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 Elehos

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Posted 18 June 2007 - 02:37 AM

Hi Sharonvandee,

It's an unpredictable course, and there are times, like last year, that the symptoms take off like wild fire, then ease up somewhat. I had a laundry list of symptoms for years (decades) before the ANA blood test alone was done, but some others are still in the normal range. At least the doctors I've gone to look at physical symptoms aside from the bloodwork, especially since certain ones can be seen or felt. I'm sorry that you have to be going through this too, and hope that a lot of your symptoms will at least cycle, giving you some relief at times and helping you to regroup before another round hits. We're here to help out however we can, even if it's just to encourage you when you need to blow a gasket and let the frustration out--and we've all been there! You'll be in my thoughts, and certainly in the thoughts of others here in the board.

Best wishes to you,
Elehos

#3 WestCoast1

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Posted 18 June 2007 - 05:01 AM

Hello Sharon,

I would guess that coming to terms with an illness has many levels, like panick, denial, anger, saddness and then acceptence and then just doing your best to beat this thing. Saddness is always a part of illness, but that is why we have this forum to share, and repair....huh that rhymes! :)

I am sorry to hear that you are going through a tough time right now, especially the swallowing issues.

I am also glad that we have the forums. I dont share my illness with anyone else except my husband because it seems that others look at me with pitty and that gets in the way of my work relationship, friendship, ect. Because of this I also feel a bit isolated, however this forum has become my "other family" and is sufficient.

When I first starded experiencing symptoms, it was a long road to receive even a shaky diagnosis. From there I had all of the blood tests. Some were positive (ANA, Scl-70) and since then several others have gone from negative to positive (anti-smooth muscle, and a few others). I do think that labs, antibodies, blood counts change over the course of ones life.

I am glad that you posted and I hope that you feel better soon.
*WestCoast*

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#4 Sharonvandee

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Posted 18 June 2007 - 06:55 PM

Thanks so much for the support it is very much appreciated, sometimes the road seems long and lonely and the heart can get a little heavy as we become overwhelmed by all this is and all that is to come. That is where I am at feeling like life is being taken from me in some ways but on the other hand I have a wonderful husband and inlaws who give me the love I need, but even they admit they can not even start to understand this diesease and what is happening. But the people in this forum who have 'been there, done that' so to speak sometimes give that little piece of advice that might help, If not they give you the support and you know they understand because they are going through it too, often in different ways, but the same disease.

Hugs to all the wonderful people who post back to questions or for support

and and extra big hug to those who are doing it alone
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#5 nan

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Posted 19 June 2007 - 11:39 AM

I have scleroderma-CREST also. It is very scary. I am fortunate to be able to travel to Johns Hopkins in Baltimore for checkups. I have a local rheumatologist, but I like being able to go to Hopkins. I also have horrible digestive problems. I forgot to see if you are on any meds for GI issues. Feel free to email me if I can help you in any way. I send good thoughts your way. :D
Nan