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Dilated Esaphogus


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#1 debimum

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Posted 21 November 2006 - 02:38 AM

Hi, I am new on here. I have not been diagnosis yet, but my family doctor thinks it's slceroderma along with my ENT. I have been through so many doctors as some of you have. I was seeing a rheumatologist and she isn't doing anything really. But I am having a lot of shortness of breath and I have some discomfort down my middle and hoarsness in my voice. I saw a pulmonary doctor last week she said my lungs are fine, but she saw my esaphogus is very dilated.

My question to you all is. Is a dilated esaphogus one of the symptoms of scleroderma? I know shortness of breath is. I also have weak muscles in my thighs, arms and chest. I am not asking anyone on here to diagnosis, just if these are symptoms someone has who has been diagnosis? I am at the end of my rope, I am missing work because of feeling like I have the flu one day, then feel like I have full blown asthma the next.

With this chest middle discomfort, I have lost my appetite. I have been on prevacid for years.
I welcome any input. Again I am not asking anyone for a diagnosis.

Deb

#2 janey

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Posted 21 November 2006 - 05:38 AM

Deb,
Welcome to the forum! I'm sorry you are here due to your health problems I'm glad that you are working hard to get a diagnosis and that you are seeing a rheumatologist. It's hard to treat something if you don't know what it is.

You asked about your dilated esophagus. I've providing a link to our esophageal involvement page. You might find something there. In a quick glance I didn't catch anything except maybe the one on the "open esophagus".

In another posting you asked about the test for diagnosing scleroderma. Unfortunately, there is no one test and most of a diagnosis is based on one's symptoms. I had an elevated ANA which indicated autoimmune, but the diagnosis was based on the list of symptoms that I took in as well as the visible problems - curling fingers and hard skin on the hands. I am providing you with a linked to Common Medical Tests for Scleroderma. Hopefully this will help as well.

Please keep us informed as to how you are doing and all of you doctor's appointments and test results. Do not hesitate to ask questions either. There's a whole lot of supportive people here.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 janey

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Posted 21 November 2006 - 06:16 AM

Deb,
One more thing I forgot to mention - You say you have weakness in your arms, thighs and chest. That was part of my initial problems as well. I use to walk up to the top of 14,000 ft mountains and within 8 months I could go up the stairs to my front door. The rheumatologist did a bloodtest to check my CPK (or CK) level which measure the amount of muscle enzymes in your blood. An increase shows muscle inflammation. It is also a test to check for polymyositis / dermatomyosits - another connective tissue disease. My CPK was at 3000 and normal is below 200. So that's a bloodtest you might want to request.

Let us know.

Big Hugs,
Janey Willis
ISN Support Specialist
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#4 Sweet

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Posted 21 November 2006 - 06:18 AM

Hey Deb,

Welcome to the forum. You will really enjoy the supportive and caring folk here. Looks like Janey provided you with a good link, so I'll just say, post when you need help, we're here for ya!!

Love Pam

Warm and gentle hugs,

Pamela
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#5 Heidi

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Posted 21 November 2006 - 07:01 AM

Hi Deb,

Welcome to the forums! I am glad you found us, but sorry it is due to your present struggles and symptoms. It looks like Janey gave you some great information and some great links. I hope you have the chance to go and read them. I have found that I can help myself best by being knowledgeable about the disease, treatments, tests etc. as then I can partner with my doctors.

Please do keep us posted on how you are doing and what your doctors have decided.

Warm wishes,
Heidi

#6 debimum

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Posted 21 November 2006 - 07:49 AM

thank you for your input. I did forget to mention that I have had three slightly positive ANA's, which were 1.80. I will be seeing a new rheumatologist because the one I have now doesn't seem to know what exactly is going on and has not given me meds after seeing her since April. I will be seeing a new rheumatologist at a teaching hospital, but have to get my family doctor to call, they need a doctor's referal. I have a vitamin D deficancy and my old rheumatologist said she doesn't know what to do for me because all her patients with this are elderly. So why doesn't she recommend someone who does know or why doesn't she do research instead of just leaving it go and not knowing why I have this deficancy.
Plus I have to get all my test reports and things sent. But I will be taking the actual films along, the hospital I had them done at are known for not reading films properly. Actually they didn't mention on my chest scan that my esaphogus was dilated, the pulmonary doctor saw that.
I also have to call and ask for the results of my latest blood work. So I have some work to do and no energy to do it. I think it's wise to change rheumies and get the proper treatment.
But thanks for your support. I am still not sure it's scleroderma, but with what the pulmonary doctor and the Ent said, it's leaning towards that diagnosis.

Deb

#7 Rose Bud

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Posted 21 November 2006 - 10:12 AM

I'm also new to this scleroderma and have the same symptoms you are describing. It has been about 4 weeks now that I have been told what I have. I don't know if I'm much help but you're not alone in the desperation.

Good luck on your search the best I can say being new is stay as positive as you can and keep pushing your doctors to address your issues.

#8 scleroguy

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Posted 21 November 2006 - 01:29 PM

Hi Deb,


My symptoms include shortness of breath, weak muscles, and the chest discomfort that you discribed. I have dermatomyosis along with slceroderma, which has more to do with the weak muscles(and muscle pain).

I agree with Janey that a CPK is a bloodtest you might want to request.

My original ANA was negative, but I had a positive ANTI-RNP that helped give me my diagnosis of MCTD(polymyositis and scleroderma).
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#9 janey

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Posted 21 November 2006 - 05:45 PM

Deb,
Sounds like you are on top of things, getting your tests results looking for good doctors. You mentioned that you had a vitamin D difficiency. You might want to read some studies on Vitamin D deficiency and its correlation to autoimmune diseases. In the article, Understanding Vitamin D Difficiency, it states "research has linked a broad range of additional benefits to having ample vitamin D. It's shown that the nutrient fights cancers and diabetes, is the pivotal feedstock for a hormone that protects muscle, and inhibits autoimmune disorders from multiple sclerosis and lupus to inflammatory bowel disease". My Vit D level id a little below normal even though. prior to getting ill, I spent at least 30 minutes or more a day outside. I now take a vit D supplement.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#10 kelowna52

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Posted 21 November 2006 - 06:30 PM

Hi Deb and welcome. You have definately come to the right place. Everyone here is very understanding, and very helpful. When this all started for me I felt scared and alone, until I found this site. My sypmtoms, started very similiar to what your describing. I had severe chest pains, with pain in the sternum area, acid reflux and terrible body pain. I had read an article in a magazine about Lupus, and the symptoms they were describing in that artickle were very similiar to what I was feeling at that time. That's what really started the ball rolling. I set up an appointment with a rheumatologist, and at first they did think I had Lupus, but as time went on they discovered that is was Scleroderma. Well, good luck to you and if you need anything, we are all here. Take care.

Jackie S.