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Stretch203
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/6/2009 3:54 PM (GMT -7)   
...hi, all-
I just signed up today and am looking for support regarding MCTD. I'm not sure if I'm submitting this correctly, so pls. forgive me if I am not. This is a recent diagnosis. Positive ANA, along with other vague but persistent lab tests. Right now, I'm struggling with accepting the diagnosis-just turned 31 and feel very overwhelmed. Also trying to deal with anger about having a disease. Any thoughts on the best path regarding the mourning/acceptance path?

Any suggestions would be greatly appreciated.

Thank you!

Jamie

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/6/2009 4:42 PM (GMT -7)   
Hi Jamie,

Welcome to the forum! ((((((((( Jamie )))))))))

You did great posting your question. It showed up twice, so I deleted one.

Before you start researching information on your diagnosis . . . make sure that it is really MCTD. There is great confusion, even among doctors, about the terminology.

There is Lupus, UCTD (undifferentiated connective tissue disease) and MCTD (mixed connective tissue disease). Some patients/doctors use the term MCTD very freely and they are describing UCTD. But true MCTD is actually a definite Lupus diagnosis PLUS Scleroderma and Polymyositis.

Lots of us have a UCTD diagnosis (undifferentiated) when the doctor can't quite pinpoint which autoimmune disease is presenting. But most of us are treated as if we have Lupus and the doctor simply treats the symptoms.

There is a post a link about this topic in Lupus Resources . . . link at the end of my signature. You'll have to look through the thread and find the right post. But there is also a link in that post.

You used the right word . . . "mourning" . . . there really is a grieving process in working to accept a diagnosis. But you are in a good place to get some help. You'll find your new normal sooner than you think!!

Glad you found us!

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)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Stretch203
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/6/2009 5:04 PM (GMT -7)   
Thank you for the well wishes.

I was told that the diagnosis is non-specific mixed connective tissue disease. Positive ANA, Raynauds, fatigue, among other tests performed and symptoms. This was diagnosed by my rheumatologist. At first they thought it was Lupus, then scleroderma. Not sure what to think, or how to rule out an incorrect diagnosis. I have seen two rheumo's and several internal med docs. To complicate matters, I have chronic sinusitis!

Any recommendations on where to start to ensure a proper diagnosis?

Thanks,

Jamie

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/6/2009 5:35 PM (GMT -7)   
Hi Jamie,

Sorry . . . this can be a really long process and I've become content with getting effective treatment. I've gotten LOTS of help here just by reading posts and learning more about auto-immune disease.

Are you sun sensitive? For years I knew that I got rashes from the sun . . .but never realized it was causing my joint pain and connective tissue issues. I now know that the effects of the sun are cumulative and I'm very careful to cover myself (umbrella, long sleeves . . .whatever works). I wasn't overly annoyed by the rashes, but just didn't connect the dots until I started reading.

Glad you found us!

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)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Stretch203
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/6/2009 5:55 PM (GMT -7)   
Yes, I am sun sensitive. In fact, I can burn very easily with limited sun exposure. I have even found that using sun screen is not very effective. Needless to say, I am very pale.

I am currently waiting for updated labs to come back, and am hopeful that they will shed some more light on what direction I need to take this. Its just so frustrating! It's hard to connect with people who aren't dealing with this, they don't understand why you are tired all of the time, etc. Sometimes, it feels like a daunting task just to go to the grocery store.

Ugh.

Jamie

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/6/2009 6:22 PM (GMT -7)   
Hi Jamie, welcome! We all know how frustrating it is waiting on a dx. Rosie has given you great advise, I just wanted to welcome you and let you know you are not alone, we are here for you. Hang in there, keep reading and asking questions.

I do have one question for you, sometimes we get so wrapped up in a dx that we forget that the treatment plan (meds) is also very important. Do your doctor's have you on meds to relieve some of your symptoms?

Feel free to ask us more questions! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/6/2009 6:42 PM (GMT -7)   
Jamie Welcome to the forum. You're among people who completely understand what you're going through and that makes a difference. Hang in there! Judy

Stretch203
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/7/2009 4:21 PM (GMT -7)   
Thanks, Judy. It does help to know that I am not alone.

Jamie

Stretch203
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/7/2009 4:23 PM (GMT -7)   
Hi, Stacie-

So far, I have sleeping meds & prednisone. Today I also found out that I have to sinus surgery. Yay-it just keeps getting better and better.
I appreciate the well wishes. Thank you!

Jamie
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