Recently this week diagnosed with MCTD

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/18/2016 5:28 PM (GMT -6)   
I am a new member as well diagnosed this past Tuesday with MCTD. I have swelling in my feet and legs as to what took me took me to the dr. In the first place. My RNP came back higher so that's what made the diag. Of MCTD. I'm scared but also am
Keeping positive. I have a cough so that is of concern of mine. Dr just wants to monitor me never put on meds and to come back every 3 months. Going to get second opinion making an appointment at the Mayo clinic. I want to be well informed. any help or info would be great!!! My stomach has been feeling tense and tightening and lost of bloating n gas not sure come this started this week. Lots of concerned and want to beat the odds of this disease

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/18/2016 6:28 PM (GMT -6)   
Why didn't you start medication? That's rather odd.

The stomach issues could be due to stress. Stress seems to make us feel worse.

I've been diagnosed for 5 years now and most days are pretty good. It all depends on keeping an eye on your symptoms and taking care of yourself.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/18/2016 6:51 PM (GMT -6)   
Idk the drsaid lets just monitor it every 3 month take blood and check your levels . Nothing else and said to call in have more symptoms . This is why I contacted the mayo clinic for second opinion haven't gotten a appt yet.

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/18/2016 6:53 PM (GMT -6)   
Should I push to see about meds

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/18/2016 6:56 PM (GMT -6)   
If I was having symptoms I would want meds.

Maybe you need a second opinion. It wouldn't hurt.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/18/2016 8:03 PM (GMT -6)   
My symptoms started as swelling retained fluid in feet then went to legs and that's started may of last year and no dr could figure out why . Kept telling me because of my age it was nothing to worry about. Then kept doing blood work my A&A came back positive . The ruethmotolgist Tested further and said my RNP came back positive or a certain number said its MCTD and then ordered more blood work and told me to read on mayo clinic about the disease. Said we will monitor it and come back every 3 months . I have a cough that won't go away . I'm 38 single parent with kids . Trying to stay positive but hard when you want to be healthy and around for your kids . I was surprised from all I have read that they didn't put me on meds or do further testing to check lungs , heart anything .

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/18/2016 8:06 PM (GMT -6)   
Plus thy still don't know what is causing the retained fluid . Is it possible to have a elevated RNP and be missed diagnosed because of an infection in the body ? Haven't lost weight don't the opposite I have gained weight . They check throid it's fine

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 2/18/2016 9:36 PM (GMT -6)   
After reading this, I would suggest a second opinion from another rheumatologist as soon as possible. I don't feel like you are being treated, but instead being dismissed. While it may indeed be nothing of consequence, something is certainly happening to give you symptoms. If don't have confidence in your Dr, and don't feel reassured... ?

Unexpected, persistent coughing for months could be nothing, could be serious. Should be investigated! Same with swelling (fluid retention?) in the lower limbs.

One way to find a good rheumy is to check out [utl]www.lupus.org and find the local chapter. Then talk to the local chapter to find out what rheumies in your area are active in the group -- those are the Drs you want to choose from.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/18/2016 10:54 PM (GMT -6)   
How do I find the local chapter? I'm sorry I'm all knew to this and feel uneducated with this. Knowing that I am intelligent and usually know all the right questions to ask I don't know where to find all the information I need. Im the only one actively seeking what's wrong. I went to the website lupus.org what are the chapters you are referring to and how do I find them ? Thank you for any help provided :-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/18/2016 11:08 PM (GMT -6)   
Click on the link below for the chapters map.

http://www.lupus.org/chapters

Mine started with legs swelling. My first primary ignored it. I went to a second one and he gave me Lasix to get rid of the fluid.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/19/2016 6:39 AM (GMT -6)   
Thank you !!! I had the same thing. Drs gave me a dietetic to get rid of fluid all it did was make me dehydrated . Then told me it was nothing to worry about I'm healthy at my age. If I wouldn't have kept pushing to find out then would not have answers. First dr said swelling in my feet was from a mosquito bite l lol. All I could do was laugh I said no offense sir but I know my body and it does not react to mosquito bites like that. What happened to you next after the swelling, the next symptoms.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/20/2016 12:29 AM (GMT -6)   
I started feeling exhausted and my joints started hurting. My hands would throb, but I think that was due to my arthritis I was diagnosed with last year.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/20/2016 12:05 PM (GMT -6)   
I have had MCTD for 11 years and had symptoms of both lupus and polymyositis. If you are having fluid retention the first thing to look at is that lupus is going after your kidneys. Typically it will be a condition called proteinuria and your urine will be "bubbly". The advice to see a rheumy is good and if warranted also a nephrologist to address the kidney problems.

Bill

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/20/2016 12:17 PM (GMT -6)   
They tested said my kidneys were good but what I don't understand by rhuemy Said he doesn't understand the fluid retention. Ok thanks bill. I don't have bubbly urine but I'll bring it up with dr. Any suggestion with a cough what causes it. I thought allergy related but think it might be more

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/20/2016 4:00 PM (GMT -6)   
MCTD can have lung problems from either lupus, myositis or scleroderma all of which can, but not necessarily, part of mctd. Sounds more like you have something not related to mctd like allergies or maybe some low level infection in your lungs. Is your heart OK or do you have circulatory problems?

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/21/2016 12:34 PM (GMT -6)   
The Drs haven't looked further into things. Only blood work saying my RNP was elevated. I have so many questions and not enough answers. They took X-ray of lungs for a type of fibrosis Hardening of then lungs said was ok though. My legs though are tight and when you massage the muscle it takes long time for it to loosen

Post Edited (Heather1229) : 2/21/2016 10:37:08 AM (GMT-7)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/21/2016 4:50 PM (GMT -6)   
Here is a good summary of MCTD. keep in mind that just because you have the autoantibody does not mean you are currently sick. This syndrome can manifest itself in many different ways and most cases are treatable. Mine was off the charts and yet here I am leading an active life. Just means a lot of vigilance and not ignoring any new or worsened symptoms.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/21/2016 8:11 PM (GMT -6)   
Thank you Bill! You have definitely helped keep me positive. Is feeling sore like in my back or tightening under my rib cage a symptom or just life lol

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/22/2016 9:43 AM (GMT -6)   
Could be from lupus or myositis. Be alert for any weakness in your muscles. There could be muscle soreness or pain and muscles usually contract causing other types of pain. If you are experiencing any symmetrical muscle weakness around the shoulder and hip girdles talk to your doctor. It would warrant treatment and testing for cpk.

Otherwise it could be from any number of things and since I don't know you or your physical conditions or habits it would be foolish to speculate on what the cause is.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Zebra2014
Regular Member


Date Joined Sep 2012
Total Posts : 46
   Posted 3/14/2016 11:15 PM (GMT -6)   
Hi, Heather -

I just saw your post, and even though I don't have much time to spare, I wanted to reach out to you even if my reply is brief.

When I was diagnosed with MCTD, my primary symptoms were chest pain, shortness of breath, and dry cough. My rheumatologist promptly ordered a CT scan of my lungs and also sent me for pulmonary function testing, so we can keep tabs on possible lung involvement.

Frankly, it sounds like your rheumatologist is unfamiliar with this disease. I am glad that you are seeking a second opinion. I hear that it is difficult to get into the rheumatology dept at the Mayo, but I wish you the best of luck and I hope you'll tell us what you find out. If you have trouble at Mayo, I believe John's Hopkins is #1 hospital for rheumatology.

Try to hang in there! Once you learn about more about the disease, AND you have a doctor who is looking out for you (so you don't have to do all the worrying yourself), you'll be able to navigate living with this chronic disease.

Please do keep us posted!

Warmly,
Nina

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 3/15/2016 6:18 PM (GMT -6)   
What are they saying for your lungs? I have a cough and sometimes feel like have to take a deep breath to not cough. I have an appt in April at the mayo clinic for consultation they don't see patients on regular basis they said but can give second opinion and give recommendations on treatment. I feel like this is being neglected by current doctor and I don't want to not be around for my kids

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 3/15/2016 9:13 PM (GMT -6)   
There are several possibilities with mctd and lung involvement. One is weakened muscles which can be mistaken for pulmonary hypertension. Inflammation of the lungs. Scleroderma. Or it could be something unrelated to mctd. Any of the normal diseases associated with mctd can cause lung problems: polymyositis, dermatomyositis, SLE lupus, and scleroderma.

MCTD is a rare disease and presents and progresses differently in each patient so don't be so hard on your doctor. You should see a pulmonologist to find out what is going on and what the appropriate treatment should be.

Cleveland Clinic description of mctd.

http://my.clevelandclinic.org/health/diseases_conditions/hic_Mixed_Connective_Tissue_Disease

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 10:57 PM (GMT -6)
There are a total of 3,006,327 posts in 329,326 threads.
View Active Threads


Who's Online
This forum has 161827 registered members. Please welcome our newest member, a8166008.
178 Guest(s), 3 Registered Member(s) are currently online.  Details
Admin, Journee, InTheShop