How many people have MCTD?

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Lady-T
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/11/2008 4:41 PM (GMT -7)   
 
 
   Hello all,
        I'm just curious to know how many people on this site have mixed connective tissue  disease. My rheumatologist said that it is a rare condition. I was also wondering if I should ask my doctor how many patients she has with this condition( just to get an idea of her experience treating this disease) because I am finding that when I ask her about things that I feel  (i.e GI disturbances, acid reflux ) she tells me that it is unlikely related. I guess I don't see how she can be so sure without doing some follow up tests.  Being newly diagnosed I don't really know what I should be asking my doctor or what other tests she should be doing. Where do I go from here? If you could share with me your symptoms and how your doctor approached the condition I would appreciate it .
 
Thank you in advance,
 
    Lady-T
 
All things work together for good for those who love God and are called according to his purpose.
Romans 8:28
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/11/2008 7:34 PM (GMT -7)   
Hi Lady-T,

Welcome to the forum!

There are a few here with MCTD.

There actually appears to be doctors and patients who use the term MCTD (mixed connective tissue disease) and UCTD (undifferentiated connective tissue disease) interchangeably.

I've posted more than a couple times about the difference . . . but its always tricky getting all the right terms nailed down.

You are right. MCTD is not so common. UCTD, on the other hand is common. Lots of us don't have enough labs or symptoms to nail down a particular autoimmune disorder and are labeled UCTD. But those of you with criteria for several specific autoimmune disorders are labeled MCTD.

I hope the others with MCTD will pop in and say hello. Sorry you are dealing with so much.

GI disturbances can definitely be related. My rheumy referred me to a GI when my large intestine started acting up with my flares. The GI is almost positive that I have Crohns to go along my connective tissue issues. And many Chron's patients have a lot of connective tissue issues with their chron's.

I like your signature!! Right on!

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)

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NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 533
   Posted 8/11/2008 7:54 PM (GMT -7)   

Hi Lady-T,

Welcome!  I wanted to post and let you know that I have MCTD.  I was diagnosed about 3 years ago.  I had been sick for years before that.  My symptoms were extreme fatigue, joint pain, stomach problems (IBS) and various other things.  I'm sorry that you are going through so much.

I have learned over the years that we know our bodies better than anyone.  If something is bothering you and you don't get a good response from your doctor then you should probably get another opinion or keep on bugging your doctor.  I know that I had to go to my doctor for several years before we finally got a diagnosis.  I just kept pushing her with my symptoms until she did an ANA blood test.  When that came back positive she finally sent me to a rheumy.  The rheumy did further testing and my RnP was positive which is indicative of MCTD.  I also have fibromyalgia.

Let us know how you are doing and take care.  I hope this has helped you some.

Mary Ann

 


 
** MCTD,Fibromyalgia,Raynaud's June 2005
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 8/13/2008 8:47 AM (GMT -7)   

Lady T,

 

I have MCTD and had a very extreme case.  By definition mctd is lupus, scleroderma, and polymyositis and you can have symptoms of any or all of them.  It is a very rare and extremely complicated disease that manifests itself differently in each patient.  There is a specific diagnosis for mctd but uctd is for those cases where overlapping connective tissue disease is indicated but the symptoms and tests do not confirm a more specific diagnosis.  UCTD is the “you have something but I am not sure what diagnosis.”

 

My disease was diagnosed and treated but months later PM hit me very hard even though I was being treated (it was resistant to prednisone) and I lost 40 lbs of muscle mass in a week.  I went into a rehab hospital in Jan 2006 as a quadriplegic who could not swallow but walked out 5 weeks later and got my feeding tube pulled a couple of months after that.   I have not had any flares in almost 3 years and have returned to an active life after months of PT and 2.5 years working out on my own to restore my strength.

 

GI problems often crop up and my entire GI tract was affected in one way or another.  I had acid reflux which developed into Barretts esophagus which is a precancerous condition.  PM weakens the sphincter muscle causing the acid reflux.  Even the physician’s assistant for my GI doctor told me that was not so and I had to tell her to talk to the doctor.  It is common.  GI problems can be caused by any of the diseases.

 

Lung problems are common and it was though I had pulmonary hypertension but a right heart catherization showed that my lungs were OK.  My problems were being caused by weakened diaphragm muscles and as I got stronger things got better.

 

You should find a rheumy that has experience with lupus and/or myositis  or connective tissue diseases.  Sometimes you can find one in private practice but the most experienced are usually associated with a large clinic or university hospital.  My main doctor is at Northwestern U but places like Mayos, Johns Hopkins, and Cleveland Clinic are examples.  You can also check out the Muscular Dystrophy Assn. and see if there is a neuro muscular specialist in your area.

 

Here are some sites that have good information about MCTD.

 

http://www.medicinenet.com/mixed_connective_tissue_disease/page2.htm

 

http://www.medicinenet.com/mixed_connective_tissue_disease/page2.htm

 

http://www.emedicine.com/med/topic3417.htm

 

Here is another forum where you will find others with MCTD. It is The Myositis Association.

 

https://www3446.ssldomain.com/myositis/forums/forum/index.cfm?souviens=114842

 

 

Go on the PM/DM or general community forums and you will find others with mctd.

 

What are your symptoms?  Do you have muscle weakness and fatigue?

 

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
 
 


Lady-T
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/13/2008 2:36 PM (GMT -7)   
  Thank you so much for your response. My current symptoms are,  fatigue, tingling in my arms and legs, I recently started getting twitching in the muscles in my legs, occasional weakness, Severe intestinal cramping prior to bowel movement ( I hope that's not too much info)  and major acid reflux.  Were there any tests that your doctor did on you? 
 Thanks again 
All things work together for good for those who love God and are called according to his purpose.
Romans 8:28
 
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 8/13/2008 3:17 PM (GMT -7)   
Lady T,
 
Lots of tests, some of them multiple times.  The diagnosis is more a combination of symptoms and lab work.  You can have this disease and labs can be negative.  You can even have a very active flare and labs can be negative.
 
Tests I had in the beginning and later on:
 
Ultrasound of abdomen
Echo heart
MRI cervical spine and lower extremities
CT scans abdomen and pelvis
liver function tests
Xrays
Bone marrow biopsy
Kidney biopsy
Muscle biopsy (this is usually the definitive test for any of the myositis diseases but not always)
Endoscopy (several times) with biopsies
Colonoscopy with biopsies
Pulmonary lung function tests
Ultrasound of lungs
Right heart catherization (actually goes into the lungs)
Countless blood tests
Bone density scan (after taking prednisone for a year)
CPK (same as CK) blood test (tests for muscle breakdown)
SED blood test (indicates inflammatory processes but does not give a specific diagnosis)
Vitamin D
Anticardiolipin antibody tests
ANA analyzer panel
Beta 2 glycoprotein I autoantibodies
Lupus anticoagulant
Video fluoroscopy swallow test (4 times)
 
I continue to get routine blood tests every 3 months and see a rheumy as often.
 
CBC with differential
Sed Rate (ESR)
CK
Comp metabolic panel
 
Hope this helps.  You might not need all these tests but many of them should be done to confirm a diagnosis.  Some of these tests were done after I developed problems like Barretts and dysphagia (swallowing) so they might not be needed for you.  Most people can lead a fairly normal life once diagnosed and treated but the problem is that everyone develops different symptoms and severity and response to treatment.  My case was not only extreme but complicated and I had/have other conditions as a result that I have not mentioned.  Most mctd cases are much milder than mine but still need skilled medical help and aggressive treatment early on to get your immune system under control.
 
Be aware of any muscle weakness or swallowing problems as they are an indication of a worsening condition.  Typical symptoms are difficulty getting out of chairs, going up stairs, raising your hands over your head, etc.  Your GI symptoms are very common and I had lots and still do not have a normal gi tract.  Just want to avoid cancer and the rest is tolerable.  Once you get a diagnosis you might want to see a GI doctor.  I had 12 docs at one point and still see several to make sure I get the best care.
 
Hope this helps but it sounds like you need to find an experienced rheumy to get a second opinion.
 
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
 
 

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