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CHAWNIE
Regular Member


Date Joined Jun 2013
Total Posts : 24
   Posted 6/11/2013 10:08 PM (GMT -6)   
I am trying to figure things out.  All of my blood tests are normal with the exception of my + ANA and elevated RNP (1.3).  My Smith Antibody was normal.  RE said that + RNP is the front gate to Lupus, Scleroderma, or MCTD.  RE said I may be in the very beginning phase of my disease.  I have done some research and have found that a + RNP is always positive in MCTD.
 
My symptoms have been: PVC's, fatigue, lightheaded, body/joint aches, psoriasis on scalp and ears, legs/feed and hands swell periodically, insomnia, geographical tongue, tonsil stones, headaches, get real tired after being outside, etc.
 
Does anyone else have MCTD?  If so, what are your symptoms? 
Chawnie
37yrs
History: 2002 positive for antiphospholipid antibody, Ectopic pregnancy. 2005 Placental Abruption with son (lost him), after birth positive for Anticardiolipin antibody. No longer positive. 2007 gave birth to beautiful daughter. 2012 miscarriage. 2013: ANA +, RNP +

Symptoms: heart palpitations, lightheaded, fatigue, body aches, headaches

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12084
   Posted 6/11/2013 11:34 PM (GMT -6)   
I'm sorry no one's answering your questions about MCTD. There's not many here with it.

Have you sat down with your rheumy and discuss your concerns with him?
We're not doctors here, but we can be a shoulder to lean and cry on.
We just share our experiences we've had with doctors and medications.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

BeachGirl777
New Member


Date Joined Jan 2012
Total Posts : 13
   Posted 6/12/2013 10:52 AM (GMT -6)   
Hi Chawnie,

I also have MCTD and only test positive for ANA (1:1280) and RNP (6.0). I tested positive about a year and a half ago but have had symptoms for several years. My symptoms are fatigue, sicca (dry mouth and eyes and geographical tongue), skin rashes - especially after being in the sun, muscle aches, slight Raynauds (mine is not too severe), insomnia.

Amber

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5604
   Posted 6/12/2013 1:15 PM (GMT -6)   
FYI - Sicca Syndrome is most commonly known as Sjogren's Syndrome, and we have a forum on it.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/12/2013 4:54 PM (GMT -6)   
Hi Chawnie, I also have MCTD. Not all cases are alike. I was first diagnosed with Undifferentiated Connective Tissue Disease and the diagnosis was later changed to MCTD a couple of years later.

My fingers were swollen and had the appearance of sausages. I also had Raynaud's... my fingers and toes were turning white, blue and red. Joints ached, and I had skin lesions, rashes but not the classic lupus mask. Initially I was photosensitive, but am not anymore. Joints were swelling bilaterally, especially in my hands, feet, knees and elbows.

I started out on prednisone and plaquenil...then Imuran and now I'm on methotrexate. WE ARE ALL DIFFERANT! Some cases are mild, some moderate and some severe.

Skin was tightening on fingers and toes and I had several "dents", the largest on my forearm. Skin biopsies were taken and the results were that I had a variant of scleroderma. I also have fibromyalgia which is not an autoimmune disease but gives a painful allover achiness feeling.

Getting a dx takes time...hang in there!!!

MCTD is systemic meaning it can affect differant organs...I have mild pulmonary hypertension.

MCTD is usually suspected if you have + RNP and have overlapping features of SLE, scleroderma, polymyositis or RA.

Clinical symptoms are just as important as bloodwork. Take pictures of rashes, lesions or swelling to show your doctor. Some symptoms can dissapear before appointment time.
 
Good Luck to you
 
Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

Post Edited (crazykitty) : 6/12/2013 3:57:15 PM (GMT-6)


CHAWNIE
Regular Member


Date Joined Jun 2013
Total Posts : 24
   Posted 6/12/2013 10:07 PM (GMT -6)   
Couchtater - I have discussed things with my RE.  He wants me to come in when I have symptoms or if my current symptoms get worse.
 
Amber - It is helpful to hear from those who have MCTD.  My RE says that it could be 3mo-5yrs for symptoms to increase and my RNP level to increase.  I have had geographical tongue for a few years now, wondering if that could be a pre-symptom.  I now have insomnia, muscle aches and fatigue for about a year.
 
Lynnwood - Thank you, I had no idea Sicca is Sjogren's Syndrome.
 
Robin - I am definitely going to take your advice and keep a log of symptoms along with photos.  Hard to take pictures of swelling if it isn't really profound.  When did you get diagnosed and how long did it take for symptoms to make a major appearance?
 
Thank you everyone, it helps to know I am not alone.  I wish none of us had any of these diagnosis'.  It scares me since I have a 5 yr old daughter who needs me around a long time.  I pray that it doesn't affect any major organs. 
Chawnie
37yrs
History: 2002 positive for antiphospholipid antibody, Ectopic pregnancy. 2005 Placental Abruption with son (lost him), after birth positive for Anticardiolipin antibody. No longer positive. 2007 gave birth to beautiful daughter. 2012 miscarriage. 2013: ANA +, RNP +

Symptoms: heart palpitations, lightheaded, fatigue, body aches, headaches

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/13/2013 7:10 AM (GMT -6)   
Chawnie, please try not to worry. You may not even have an autoimmune disease. If you do, it is possible to live an enjoyable life. You learn how to manage your side effects and flares. Autoimmune diseases are not automatic death sentances. Many people are LIVING a better, healthier life today because of newer therapies. Taking a "ONE DAY AT A TIME" approach really helps.
 
I have a myriad of conditions that have some of same symptoms so it is difficult to pinpoint what conditions started brewing first. Remember we are all differant and we all have differant time tables. There are no two cases alike. That is what makes it so difficult to get a diagnosis.
 
I'm now 61. In my late 40's, I developed migraines and achiness. At the age of 50, a MRI showed degenerative disc disease. A lumbar laminectomy was performed. Soon after, Raynaud's, osteoporosis, and osteoarthritis set in. All my life, I've had trouble with insomnia.Other symptoms slowly moved in. I saw my first rheumy at age 50. My hubby's work required multiple moves, so I have seen a number of docs in differant states. My present rheumy first diagnosed me with UCTD around the end of 2007 and my diagnosis changed to MCTD in the spring of 2009.  He sent me for a consult with another rheumy for a confirmation of diagnosis.
 
Everyone here has a differant story. No matter what comes your way, you will find you are stronger than you know. I'm living a good life and I'm happy. Living with an attitude of grattitude has really helped me.
 
Hang in there yeah You will do just fine smilewinkgrin
 
Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

Post Edited (crazykitty) : 6/13/2013 7:19:05 AM (GMT-6)


CHAWNIE
Regular Member


Date Joined Jun 2013
Total Posts : 24
   Posted 6/16/2013 9:46 PM (GMT -6)   
I have been noticing more swelling in my hands and feet lately.  Especially early in the morning and at night.  My hands feel puffy and tight (it isn't real noticeable), just feeling it right now.  My feet/ankle have shown more noticeable swelling, can't see ankle bone.  I had mentioned these symptoms to my RE.  He said to come back if symptoms don't improve or if notice new symptoms. 
 
Do I let my RE know that I am still having swollen hands and feet?  Not sure when I should inform him if he is already aware of most of my symptoms.  How often to you notify your RE of your symptoms?
Chawnie
37yrs
History: 2002 positive for antiphospholipid antibody, Ectopic pregnancy. 2005 Placental Abruption with son (lost him), after birth positive for Anticardiolipin antibody. No longer positive. 2007 gave birth to beautiful daughter. 2012 miscarriage. 2013: ANA +, RNP +

Symptoms: heart palpitations, lightheaded, fatigue, body aches, headaches

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5604
   Posted 6/16/2013 10:18 PM (GMT -6)   
(I assume RE means your rheumotologist?)

I would just call and leave a message for the Dr that you are still having issues and that they have gotten worse (if they have?). Let the Dr decide if he needs to see you again or not.

When my Lupus was more active, I saw my rheumy every month, so I'd just update at the visit. Now that it's less active, I only see him every 6-8 months, so I'd call if anything changed. I'm sure everyone does it differently depending on the Dr/patient relationship & how familiar they are with the disease.

Meanwhile, try eating less salt and drinking more water. Both salt and low water consumption are common reasons why hands/feet swell, even without other disease.

Also, are you getting a bit of exercise? Just walking around the house or two the mailbox counts! Moving helps your body fluids move to where they should be instead of settling & swelling!

Hope you feel better soon.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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