Can’t they make up their minds?

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Regular Member

Date Joined Nov 2008
Total Posts : 106
   Posted 2/5/2009 2:57 AM (GMT -6)   

Well I saw my Rheumy on Tuesday as well as the Rheumy intern and the clinical clerk about my condition.  That’s all I can call it for now I guess.  They’re a little stumped It’s been almost ten years since I first sought help about the pain and stiffness in my hands and feet.  I have had an ever rising +ANA, ESR and CRP.  All this while my hormones are all over the place as well as my iron levels going from too high to too low and depression.   Now they want me to come off the Prednisone so they can get the full effect of my condition (not something I'm looking forward to) because they think it’s masking some symptoms.  They have decided that I don’t have Sjogren’s and that’s good.  They just don’t know what I have.  MCTD they think but what is that really??   The Rheumy told me it’s a DX in progress…….OK?  I guess when I’m six feet under it will be solved.  I’m just getting a little frustrated not knowing what I have got exactly.   Not that long ago I could leg press 800 lbs bench 250 lbs and lift 500 lbs now I can’t get up from a squat, I have trouble lifting a jug of milk not to mention being so sore and tired all the time.  All the drugs have made me gain over 60 lbs putting me over 320lbs.  How do lose the weight if I don’t have the strength and energy to exercise let alone my daily activities???   Their must be a bottom to this slope at some point.   confused   confused   

DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg, Metoclop 10mg and numerous other supplements 
Life is what you make of it.  Just something I try to remind myself every day.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 2/5/2009 8:49 AM (GMT -6)   
(((((((((( Bry ))))))))))

You are in great company. Your post has been echoed many times here by others. I see the same thing on the Crohn's board too. Folks receive a dx of Crohn's and then they are told they never had Crohn's. ???????????? What? Very frustrating. . . to add "no label" to these chronic diseases.

I included a quote from a Lupus Resource post about UCTD - MCTD.

AlwaysRosie said...
There seems to be enough interest in this subject to give it it's own topic so that it can be easily found when someone wants to refer to the difference between UCTD and MCTD.

UCTD (Undifferentiated Connective Tissue Disease vs. MCTC (Mixed Connective Tissue Disease)

If you want more detailed info . . . you can check out the following site:
above link explains, in part, that . . .

When these conditions have not developed the classic features of a particular disease, doctors will often refer to the condition as "undifferentiated connective tissue disease," or UCTD. This designation implies that the characteristic features that are used to define the classic connective tissue diseases are not present, but that some symptoms or signs of a connective tissue disease exist. For example, a person may have a special antibody in the blood, such as antinuclear antibody and muscle pains, but no other definable features of a classic connective tissue disease. Individuals with undifferentiated connective tissue disease may never develop a fully definable condition or they may eventually develop a classic connective tissue disease.

Mixed connective tissue disease [MCTD], which was first described in 1972, is "classically" considered as an "overlap," or mix, of three specific connective tissue diseases; systemic lupus erythematosus, scleroderma, and polymyositis.

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

Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 2/5/2009 12:16 PM (GMT -6)   

thank for this web link.  another question  to be added for the Rheumy
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

Veteran Member

Date Joined Mar 2006
Total Posts : 2607
   Posted 2/5/2009 12:28 PM (GMT -6)   

You have my sympathy and my understanding because I've been where you are and it feels like life will never be the same again. I gained a lot of weight and hated going out in public. As I began tapering off prednisone the weight slowly started falling off, and as we got my other meds under control, and I started feeling better, I had more energy to focus on the foods I ate. I've switched from eating whatever I wanted to eating fresh foods, and fruits and vegetables. I also cut out gluten which helped me feel better and lose weight as well. So far I've lost 30 of the 70 pounds I gained. But believe me, when I was up 70, had a moon face and huge tummy, I felt like the world was coming to an end. But friend, there is a light at the end of this tunnel.

We call what you have dx limbo, and it can go on for so many years, cause depression, overeating, and a feeling of hopelessness. But your rheumy seems to be working hard to get a dx.

Hang in there. I'm glad you came here for a place to vent. Trust me, we understand.


SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 2/5/2009 1:48 PM (GMT -6)   
Hi BigBry,
Yes, we all understand the limbo you're in right now.  Sometimes, a diagnosis will change from being just Lupus, to MCTD.  That has happened in my case.  As the years have gone by, I have acquired more than one autoimmune disease. So the new diagnosis for me is MCTD. Not just Lupus.  The diagnosis procedure can go both ways.  Regardless of whether your diagnosis is called Lupus, MCTD or UCTD, your treatment will be the same.  Same meds, etc.  i know it's psychologically important to have a diffinitive name for the disease. I totally get that.  You're headed in the right direction, and the puzzle pieces will fall into place eventually.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined Nov 2008
Total Posts : 106
   Posted 2/8/2009 4:40 AM (GMT -6)   
Thanks everyone I appreciate the understanding, support and info.

Thanks again
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.

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