MCTD or Lupus?

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kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 6/5/2007 7:05 PM (GMT -6)   
Hi everyone,
  I am new to the site and I am so happy I have found you!! I was always worried if I joined in on a support group or a chat forum I would see people with severe forms of the same diagnoses I have and become even more frightened than I already am. But, all I have seen from the previous post is support and helping each other cope in realistic ways.
  I am 30 and was diagnosed last year with mixed connective tissue disease and sjogren's . My rheumotologist at the time told me MCTD was just a generic way to say we don't know what you have for sure yet and in the future it is likely I will be diagnosed with Lupus, MS, or RA. Well I felt that was a nice way to say live in panic until you are sick enough for a real disease to replace the MCTD. That was last year. I continued to feel bad all the time but since I have always been such a drama queen my family and friends thought I was just being dramatic. During this same time my brother was diagnosed with Chrone's and he was very very ill and looked ill. But, I felt bad but looked fine. How can you look so good and say you feel so bad. What they couldn't understand was it was taking 2 hours to look that good where before it would take 30 mins. I began to think maybe I was crazy. Then at the beginning of this year I began to have symptoms of all three of the diseases that make-up MCTD. Lupus-extreme fatigue, weakness, joint swelling, hands legs and feet swollen, low grade fevers everyday. Schleroderma-red spots on skin, skin tightness and itching. polymyositis-muscle weakness, muscles tender to the touch, trouble climbing stairs, hard time doing anything that requires strength. So I decided in May to find another doctor. My new Rheumotologist who I see Thursday for my newest lab results (blood test, urine, and chest xray) says that I could just have Lupus and not MCTD because a possitive RNP and ANA can be present in Lupus as well. So this has been a long road to my question but has anyone else been diagnosed with MCTD and then later been diagnosed with Lupus. Also if so do you have both diseases or does Lupus replace the MCTD diagnoses?
Thanks for listening to my story 

Kasey (kncb95)
Dx: Mixed connective tissue disease '06, sjogren's '06,  GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97
Adderal and lots and lots of vitamins
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/5/2007 7:28 PM (GMT -6)   
Hi Kasey and welcome.  First of all I'm sorry you have gotten so sick and that you have to deal with feeling so rotten.  As I'm sure you know through your own experience, these illnesses can be very tricky to diagnose and even differentiate from each other.  I don't have MCTD, so won't be able to help much, but we do have several people here who do have it and I know they will try to be as helpful as possible if they see your post.
 
As for your family and friends it can be very hard to let them know how sick you are when you like "fine" on the outside.  Lupus asn MCTD are what a lot of us call invisible illnesses.  With a broken leg you can see the cast and crutches and the most you might see with lupus is some red cheeks.  There's a great website called http://butyoudontlooksick.com and in that website there is something called the Spoon Theory.  The Spoon Theory is the best way I have found to explain to family and friends what it is like to live with lupus everyday.  I printed copies and handed them out to people.  It is written by a young woman with lupus and it is really amazing.
 
Feel free to ask any questions and also know we are here for you if you are having a rough day and need support.  Take care and I'm so glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



ladybug44r
Veteran Member


Date Joined Jul 2006
Total Posts : 815
   Posted 6/5/2007 8:26 PM (GMT -6)   
I have the spoon theory on my fridge for all to see. So when I get to tired to do something and b/f says anything I point to it and tell him to read it.

Veronica

Tammy B
New Member


Date Joined May 2007
Total Posts : 18
   Posted 6/5/2007 10:36 PM (GMT -6)   
Hi Kasey, and from one newbie to another, this site has been extremely wonderful for my sanity since I found it just last week!!! It is so nice to have found a place where you can vent, ask questions, or just view other people's experiences even though I do have an extremely understanding and supportive husband, family and group of friends. I do have to agree with the others -- the "Spoon Theory" is the BEST! When I read it, I was amazed at how wonderfully it explains each and every minute of life as we all know it now. I have forwarded the site www.butyoudontlooksick.com to my family members, and clostest friends (the ones that I really want to know!) so that they can at the very least know why I just can't make it to a get together or meet for dinner, etc. I have had friends tell me, with tears in their eyes, that they always THOUGHT that they understood how bad I was feeling, but, after reading the Spoon Theory, felt like they seriously never had a clue. My intent wasn't to make anyone feel bad, but, just to let them into my world a little. I LOVE the idea of posting it on my refrigerator! Don't mind if I steal that idea, Veronica, do you???

My rheum also told me something similar to what yours said. I have been dxd with mctd with 90% probable lupus (right from the rheum's mouth!), & fibromyalgia -- I DO NOT have pos ANA, but do have Anti-sm & anti-rnp (anti bodies found only in lupus patients -- also right from the rheum's mouth!) -- I believe and have heard the same thing that you say -- mtcd is usually the generic dx before more symptoms show up. You are not alone, and even though you may feel like it at times, this is by far the best place that I have found to make me feel human again!!

Best of luck to you with your family and friends -- give the Spoon Theory a look, it is an extremely helpful tool!

Feel well~ Tammy
dx: fibromyalgia 2006; uctd/probable lupus 2007; hypothyroidism
 
rx:  Prednisone 40 mg./day; plaquenil 400 mg./day; levothyroxine .025 mg./day; sertaline 100 mg/day; allegra d; caltrate plus d 600 mg. 3x/day; multi-vitamin


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 6/5/2007 11:22 PM (GMT -6)   
Thanks so much for the link. I love the line of the spoon theory that says how can I explain to her what I haven't even been able to explain to myself. I have been looking for words to express to my husband how I feel. He is supportive but just can not wrap his mind around how this woman who used to do the job of 3-4 people can't even carry a basket of laundry downstairs.
-Kasey
Kasey (kncb95)
Dx: Mixed connective tissue disease '06, sjogren's '06,  GERD '05, insulin resistance '01, ADHD '01, major depression '98, polycystic ovarian syndrome '97
Adderal and lots and lots of vitamins
 


Tammy B
New Member


Date Joined May 2007
Total Posts : 18
   Posted 6/5/2007 11:55 PM (GMT -6)   
Kasey~ Glad that you read about the spoons! It does have an effect on people after they read it -- my mother-in-law called the other day, and asked how I was feeling and asked how my spoons were holding up for the day! It made me chuckle, and also let me know that she really read and understood what the theory was all about! I actually read it to my husband -- not that I thought that he wouldn't read it on his own, but, because it was 2 pages, he might find himself skimming through it instead of really reading ALL of it. To my surprise, I broke down at the part of wanting the life that I have left behind..........I never thought that I would be so emotional, but, reading it to him also made me understand it more myself! I used to be a very active person -- exercising 5-6 times/wk., running, playing rec. soccer, being mother to 3 young girls, and now there are days that I can hardly get out of my own way, the turn around is amazing!!! I am hopeful that after my rheum gets my med regulated I(as much as he can), that I will be able to do at least more that I am able to do now.

Feel well~ Tammy
dx: fibromyalgia 2006; uctd/probable lupus 2007; hypothyroidism
 
rx:  Prednisone 40 mg./day; plaquenil 400 mg./day; levothyroxine .025 mg./day; sertaline 100 mg/day; allegra d; caltrate plus d 600 mg. 3x/day; multi-vitamin


CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 6/6/2007 6:59 AM (GMT -6)   
Hi Kasey,

I have had the MCTD diagnosis for about a year now. I was under the impression that UCTD (undifferentiated as opposed to mixed) was used when the results of certain test indicated a connective tissue disease that was likely to turn into some other autoimmune disease (like Lupus) but that one could have MCTD and, if controled early, that would "be it".

Of course, we get conflicting information. The rhuemie that diagnosed me said that of the autoimmune diseases, if she had to have one, she would pick MCTD because it is often mild. This conflicts with Bill's (Bsime) experience as he has had a very severe case (I hope he comes along, sees your topic and posts as he has good info and explains it well).

I'm not sure if matters what it's called as long as the treatment successfully controls it but that viewpoint doesn't seem to be held from many here. (My bad reaction to labels may be because they have tried to label my son, first with asybergers then with autism. My claim is the label doesn't matter and that my son is, as everyones children are, unique and I don't want anyone judging him by his label).

Anyway, I think that (to answer your specific question) a lupus diagnosis would replace the MCTD one and that one doesn't have both at the same time.

Good Luck,
Stay Strong,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1224
   Posted 6/6/2007 10:52 PM (GMT -6)   
kncb95 said...
Hi everyone,
  I am new to the site and I am so happy I have found you!! I was always worried if I joined in on a support group or a chat forum I would see people with severe forms of the same diagnoses I have and become even more frightened than I already am. But, all I have seen from the previous post is support and helping each other cope in realistic ways.
  I am 30 and was diagnosed last year with mixed connective tissue disease and sjogren's . My rheumotologist at the time told me MCTD was just a generic way to say we don't know what you have for sure yet and in the future it is likely I will be diagnosed with Lupus, MS, or RA. Well I felt that was a nice way to say live in panic until you are sick enough for a real disease to replace the MCTD. That was last year. I continued to feel bad all the time but since I have always been such a drama queen my family and friends thought I was just being dramatic. During this same time my brother was diagnosed with Chrone's and he was very very ill and looked ill. But, I felt bad but looked fine. How can you look so good and say you feel so bad. What they couldn't understand was it was taking 2 hours to look that good where before it would take 30 mins. I began to think maybe I was crazy. Then at the beginning of this year I began to have symptoms of all three of the diseases that make-up MCTD. Lupus-extreme fatigue, weakness, joint swelling, hands legs and feet swollen, low grade fevers everyday. Schleroderma-red spots on skin, skin tightness and itching. polymyositis-muscle weakness, muscles tender to the touch, trouble climbing stairs, hard time doing anything that requires strength. So I decided in May to find another doctor. My new Rheumotologist who I see Thursday for my newest lab results (blood test, urine, and chest xray) says that I could just have Lupus and not MCTD because a possitive RNP and ANA can be present in Lupus as well. So this has been a long road to my question but has anyone else been diagnosed with MCTD and then later been diagnosed with Lupus. Also if so do you have both diseases or does Lupus replace the MCTD diagnoses?
Thanks for listening to my story 

Saw this post earlier but had to attend a lecture on remnants of the big bang...talk about confusing!
I have MCTD and had a very extreme case.  MCTD is a specific disease which consists of symptoms of lupus, scleroderma and polymyositis.  It has a specific diagnosis although it manifests itself differently in each case.  I had symptoms of lupus and that was diagnosed first.  2 months later MCTD was diagnosed and I had the classic symptoms of PM.  Scleroderma was present but it is still debateable how much it has affected me.  I believe that most of its' impact was in my GI tract...esophagus, stomach, and lower GI.
MCTD often morphs more into one or another of the diseases but you still have mctd.  Most typically it is scleroderma.
If the overlap is unclear then the diagnosis would be uctd...undifferentiated connective tissue disease.  This often becomes a clearer diagnosis over time. 
My case started with some telltale lupus symptoms: mild anemia and low platelets.  They actually started in 1990 but I never had a flare until 2005.  My platelets had gone even lower by Sep 2004 and my internist sent me to a hematologist who finally concluded after many months and tests that I had lupus.  2 months later I had my first flare which seemed like gout.  Within a few days it was obvious it was not.  Swelling, redness, pain in both feet/ankles which spread to my legs and later arms.  All my joints become inflamed and I started to have problems going up and down stairs.  Within a few weeks I was diagnosed with lupus and 2 months after that mctd.  My doctors predicted mctd based on symptoms long before it could be diagnosed.
They started me on 60 mg of prednisone but 2 months later PM hit me like a freight train.  I lost 40 lbs of muscle mass in a week and was left a quadriplegic who could not swallow.  GAmma globuliin saved my life and my docs put me on imuran as well.  It took 3 months of physical, occupational and speech therapy to restore my functionality.  Today I have recovered substantially (played golf today) but nowhere near 100%.  I work out on my own several times a week and continue to make slow progress.  I had kidney problems (proteinuria, hematuria), auto immune induced hepatitis, and my entire digestive tract was involved.  Prednisone helped my joint problems but had no impact on PM.
Fortunately, most mctd patients do not go through anything as bad as I did.  No one can tell you how your disease will evolve but early diagnosis and aggressive treatment make recovery probable.
If anyone tells you that you look OK but you don't feel OK they should read some of my posts.  While most do not have it as bad as me I am an example of how devastating this disease can be.  You have many of the same problems of lupus but add in the myositis equation of muscle weakness which can be almost total.  I was so weak when I entered the rehab hospital I could not raise my arms, stand, swallow, or even turn over in bed.  My world was a hospital bed and I could not even reach the boundries of the bed.  If I had not done hydro therapy I probably would not be walking today as I was too weak to do any exercises against gravity.  I would fall like a rock.
Hopefully, you will never be like I was and recover in time.  In the meantime, you have to respect what your body is telling you and NOT overstress yourself physically and emotionally....no matter what anyone else tells you.  If there is a local TMA (The Myositis Assn) local support group (called KIT) you should contact them and attend the meetings.  It is more likely you will find a local lupus group (Lupus foundation of America) and you will find people there with mctd and many other AI diseases.  Most encourage spouses and family to attend.  Everyone will get an education and appreciation of what you face.
Here is one of many links to good info on mctd:
By the way, I went from being a well conditioned athlete (although I am 64) to a total cripple in less than 6 months.  Everyone was in shock to see someone who just months before had been skiing, mountain climbing, and doing things that people 1/3 my age normally do.  All of us have challenges educating our families, friends, employers about our disease.  But you are not imagining your symptoms and you must adjust your life.  Hard to do when you are sick and barely coping with getting out of bed...if you can do that.
Ask more questions or email me if you have more personal questions.  All of this is difficult but I am an example that even the sickest can get better.
Bill

Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, 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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