Unidentified Connective Tissue Disease

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mkpeace
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/3/2008 6:37 AM (GMT -7)   
I have been told I have an Unidentified Connective Tissue Disease.  I am 47 years old.  about a year ago I had  surgerys on both of my hands a sympathectamy.  The hand surgeron told me I had Reynauds and so as not to lose my fingers because there was no circulation there I had to have this surgery.
After the 2 surgerys I began not feeling well. I had problems swallowing, my shoulders hurt so bad I could not raise them and my right lung hurt when I took a deep breath.  I went to the emergency room and they told me I had walking phenomoia and phlurisey.
The lung pain never went away and I was told to go to a pulminary doctor.  He told me he thought I should see a rheumitologist.  This doctor did many blood tests and decided I had an unidentified connective tissue disease.
I went on prednizone for a while and got better but I still have the pain in my shoulders and a pain in my right lung when I take a deep breath.  I cannot (nor can they) tell me why I still have the pain in my lung.  My doctor says that it's probably something that is cronic.
Does anyone else have the shoulder pain or the lung pain?
This is such a confusing disease.  I am not in the kind of pain that I feel I need to be on the predizone but it is confusing that no one can tell me "why" for so many of my symptoms.
 
Sorry for the mispelled words!

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/3/2008 7:14 AM (GMT -7)   
Hi Peace! Welcome to the forum!

Many here have been dx'd with Undifferentiated Connective Tissue Disease. Its treatment is similar to Lupus. . . because they are both Autoimmune Disorders. Our immune system is attacking our own healthy tissue.

Did your doctor start you on plaquenil? Often, that's the first step. It takes several months to fully build in our system but can be very helpful with some of our symptoms.

Did you have a positive ANA? Do you have rashes on your cheeks or sores in your mouth?

There are some links at the end of my signature that might be helpful to you. They are Lupus sites . . . but also very helpful for those of us with UCTD (Undifferentiated Connective Tissue Disease).

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mkpeace
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/3/2008 12:57 PM (GMT -7)   

I did have a positive ANA test.  I do not have the rash or sores in my mouth. 

I am not on any medication right now.  They put me on the prednizone for a while but took me off because my symptoms were not to where I felt the side effects (of the prednizone) out weighed the pain.  They are constant but not debilitating.  I have the pain in my shoulders and the pain when taking a deep breath. I have been to a pulminary doc. and he said there is no indication that I have any loss of lung expantion.  It's not that I have trouble breathing it's just that it hurts when I breathe deep.

It's just frustrating not to have anyone that understands it.  My doctor just listens and nods his head but cannot really give me any definate answers.  Some days I wake up and feel worse than others but it seems to get a little better the more I move around but is still always there.

Thank you for your reply.  I will look at the sites you recommended.

Is there anyone out there that had the phlursey that did not go away?


rainstorm45
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/3/2008 7:51 PM (GMT -7)   
Hi there!
I am 30, and last year was diagnosed with Raynauds. I have an awesome primary care who ran extra blood work and decided I needed to see a rheumatologist. Since then things escalated, weird asthma flare ups, stiff and sore for no reason, and I get weird sores and rashes. the rheumatologist said my ANA was really high (in the 2000 range?) and my blood sedimentation was high too. Does anyone know what Unspecified Connective tissue Disorder really is? It's my "diagnosis" and I can't find good info on it. In the meantime my rheumatologist said I didn't have Lupus "yet" and to start meloxicam and plaquenil. I have a 2 year old child to care for, and am increasingly worried about having the energy to care for her. Does anyone have good info on this disease?
Thanks!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/3/2008 8:11 PM (GMT -7)   
UCTD is undifferentiated connective tissue disease and is a typical diagnosis when someone does not have a clearly definable set of labs and symptoms but exhibits symptoms of several AI diseases.  UCTD often morphs into something else over time.
 
I have MCTD (mixed connective tissue disease) which is lupus, scleroderma, and polymyositis.  Many AI diseases are difficult to diagnose and it can take a long time to get a definitive diagnosis. 
 
Sounds like you might have doctors who are not that experienced so I suggest you interview doctors and/or clinics to find ones who have lots of experience with AI diseases.  Even if you get a diagnosis these diseases manifest differently in each and every case and no doctor can accurately predict how yours will evolve or how you will react to treatment.  Frustrating but a fact of life.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/3/2008 9:59 PM (GMT -7)   
Hi Rainstorm,

Welcome to the forum. Some good information in the links at the end of my signature.

You should start a new topic and introduce yourself there. Members won't see your post in this thread because they are answering mkpeace and won't necessarily read the other responses to her.

I'm sorry you are having such a hard time.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Laz
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/21/2010 1:38 PM (GMT -7)   
I have had erythema nodosum now for four years.  I have treated with at least five hospitals and don't seem to be improving, in fact, I feel as though I have deteriorated.  I have taken Prednisone the entire time and it seems to be the only medication that makes any difference.  I have taken methotexate, plaquenil, Cellcept, and Dapsone.  My symptoms are red painful nodules on my extremities, low white count, low hemoglobin, and low red blood cells.  I'm looking for answers like I am sure you all are.  If you have any knowledge of a doctor who specializes in auto-immuune diseases please let me know.  Thanks and God Bless......Laz     cool

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 7/21/2010 2:02 PM (GMT -7)   
Laz,

You might want to start your own thread to introduce yourself and ask questions.
Auto-immune diseases are most often treated by rheumotologists.

However, it appears that erythema nodosum is treated by dermatologists and internists -- my quick read shows it isn't an auto-immune disease? You probably have more up-to-date info than we do as we tend toward lupus and mctd here.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/14/2010 9:09 PM (GMT -7)   
Bsime,
I agree with you. I too have MCTD and that is what it sounds like to me. Obviously it is different with each person but it reminds me of myositis.

mkpeace,
did your dr say anything about you positive ANA being speckled? I'm not an expert but that is how mine showed up. so just wondering.

best advice I can give is stay out of the sun, stay as cool as possible and eat ice or drink water.
good luck.
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