Undifferentiated Connective Tissue Disease

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Daisy:)
New Member


Date Joined Apr 2011
Total Posts : 6
   Posted 4/15/2011 7:49 PM (GMT -6)   
New to this forum and wondering if anyone else has had their Lupus diagnosis changed to Undifferentiated Connective Tissue Disease?  Not sure of the difference.  I am really frustrated right now because my Rheumatologist throws around Lupus, UCTD, and Fibromyalgia labels but than discounts and minimizes my symptoms.  It's not so much that I need a "label" to blame something on, it's just that I'm the sickest I've ever been and I'm now wanting and needing to really educate myself on things that I can do to improve the quality of my life.  I know that symptoms blend between all three conditions, however autoimmune can be treated with prednisone (which I went off of over a year ago), where Fibromyalgia has no magic pill (Lyrica didn't agree with me.)  I don't know if I'm under-medicated, or if I need to go in direction of alternative medicine, diet, and lifestyle changes (although I'm so fatigued and in pain I don't seem to be able to do anything as of late.)  I'm feeling lost and hopeless and would welcome advise.  Currently have therapist & psychiatrist and massage when I can.  Other than that, spend a lot of time in bed and am unable to do much activity.  I'm caught in a viscious cycle of not feeling well and being fatigued and in pain so I rest in bed, which makes me stiff and weak and in more pain, so when I try to get up and around and be productive I feel horrible and need to rest in bed again.

Lupus and Reynaud's Syndrome 2002; Fibromyalgia added 2006; Lupus diagnosis changed to Undifferentiated Connective Tissue Disease in 2007; Gastroparesis (stomach paralysis) 2007-2010; Lifelong struggle with depression; Anxiety with panic attacks since 2008.
Medications: Plaquenil, Fentanyl patch, Tylenol, Aleve, Methocarbamol, Klonopin, Wellbutrin, Microgestin, Kava, Vitamin D, Miralax, Multi

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 4/15/2011 10:55 PM (GMT -6)   
UCTD is a different diagnosis and is an overlapping connective tissue disease which means you have lupus and symptoms of one or more other AI diseases.  UCTD is often used when a case is not able to be diagnosed precisely and often morphs into something more concrete like MCTD (mixed connective tissue disease) which is lupus, scleroderma and polymyositis.
 
Treatment is often the same as for lupus.  Alternative medicine, diet and lifestyle might help to complement more aggressive treatment but don't think of them as primary treatments for serious AI disease...they are not. 
 
 
 
These links might help you understand it better. 
 
Suggest you get a second opinion to make sure you are being treated properly.  Plaquinel is usually given for mild cases and stronger meds are available to deal with severe or complicated cases.
 
Bill
 

Daisy:)
New Member


Date Joined Apr 2011
Total Posts : 6
   Posted 4/16/2011 11:48 PM (GMT -6)   

Thanks Bsime for those links.  It might sound weird that I'm confused about my health issues since I was first diagnosed with Lupus in 2002.  But for years I just had sore joints and muscles once in awhile and I relied on my lab results and what my doctors told me.  And I've kind of been in denial.  For the last year I've been getting progressively worse and I am at my breaking point and realizing I need to be better at being my own advocate (which is difficult because I'm not very assertive or confidant.)  I do have an appt. to get second opinion at a Fibromyalgia clinic (which is part of a Rheumatology dept. of teaching hospital.)  I have been sick with virus symptoms (sore throat, post nasal drip, low grade temp., weak feeling, nausea, swollen glands, flu feeling) for over six months now.  My current doctor told me "Well, people with your conditions just get sick a lot, and it's just something you need to learn to live with."  Absolutely no advice or direction given.....makes someone feel hopeless. 

 

 

Lupus and Reynaud's Syndrome 2002; Fibromyalgia added 2006; Lupus diagnosis changed to Undifferentiated Connective Tissue Disease in 2007; Gastroparesis (stomach paralysis) 2007-2010; Lifelong struggle with depression; Anxiety with panic attacks since 2008.
Medications: Plaquenil, Fentanyl patch, Tylenol, Aleve, Methocarbamol, Klonopin, Wellbutrin, Microgestin, Kava, Vitamin D, Miralax, Multi

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 4/17/2011 10:28 AM (GMT -6)   
Daisy,
 
You need to find another doctor.  Some people with lupus live fairly health lives once the disease is brought under control.  Others do have problems but for the doctor to just say that is ignorant.  I have been sick once in the past 6 years with a sinus infection...otherwise, not even a cold.
 
As for MCTD it is defined as lupus, scleroderma and pm although not all cases present with symptoms of all 3.  Some doctors have expanded the definition to dermatomyositis and RA but MS is an entirely different disease.  It is not an idiopathic inflammatory muscle disease but part of a group of neurological disease that cause demylenation which causes mobility problems.  The only thing in common is they are both auto immune. 
 
 
 
Bill
 
 

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 4/20/2011 10:28 AM (GMT -6)   
Daisy, I feel like am where you are. I have terrible muscular pain, limited mobility in arms, legs, lower back, have had pleurisy, kidney stones, tingling in hands and feet, iron deficiency, b-12 deficiency, memory issues, muscle spasms in feet, lower back, weakness in hands and extreme fatigue. ( I also have the "coming down with a cold" symptoms but never actually get the full blown cold - just the sore throat and sinus pressure. I have had several rounds of antibiotics but no relief)

The rheumy says that I have fibromyalgia but feels as though I may have something neurological going on. The neurologist feels that I have something autoimmune, and both have mentioned connective tissue disorder/disease. They all talk in riddles so I am not sure what they are really looking for. This past flare, which I am STILL suffering thru, the rheumy told me to double my mobic and see if that helps. Well, it did not so he had more blood work done (which I just did yesterday). Previous blood work has ruled out lupus, lymes and ms. but I understand that that is possible and later can be possitive for any of those. I did also have the mri to rule out ms. All it showed was a rather large thyroid which I have since had removed.

I really don't care if I have the diagnosis of fibro, cfs, lupus.....I just want to make sure I am on the right meds to relieve symptoms or meds to slow progression if necessary. I wonder sometimes why doctors just don't give patients the meds that will help lupus if they suspect it even if the blood work says otherwise. Would it be more beneficial to the patient with the possiblility of lupus or more harmful to give it to the patient that doesn't have it? That, I guess, would be the question.
Denita
***************************************

Fibromyalgia. Arthritis/bursitis/meniscus tears in both knees.
Cancer survivor
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