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    Old 01-26-2005, 03:46 PM   #1
    journeygirl
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    Undifferential Connective Tissue Disease

    Hullo, I know I don't post here very often but I'm feeling all confused now. I just got back from a physical with my Primary. Normally she just kind of shakes her head at me, gives me vague answers, is always concerned my physical problems are depression and in general isn't much help because she's never treated a Lupus person before. So, I'm always referred to my Rheumy.

    This time she was more helpful because she actually read me the Rheumy's last notes from my Rheumy visit 2 months ago. Apparently because I have chronic tennis elbow (now in both elbows), chronic muscle spasms and because of my low C3, really high ANA 1:1640) which is constant he's actually written down the words Undifferential Connective Tissue Disease to explain my issues.

    It doesn't sound like much does it? On one hand I feel better because at least he doesn't think it's all in my head. On the other hand, it isn't really a DX (as my primary says, the Rheumy isn't really committing to one specific disease).

    So here's my questions: How many of you were UCTD before getting DX'd? I know I could be in this status for years (LOL, what am I talking about it's already been nearly 4 yrs). Has anyone ever gotten better? Or are we talking about bigger and bigger flares until organ involvement/blood discrepancies to show SLE or like auto-immune? My primary says it's better that I'm 46 since people in more mature (bah!) yrs are less likely to develop into full-blown really bad autoimmune disease stages.

    So what do you all think of her comments? I'm not sure what to think to be honest.
    btw, thanks to all for posting, I've been revisiting all the threads and I feel like I know a lot of you.

     
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    Old 01-26-2005, 07:08 PM   #2
    patience 50
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    Re: Undifferential Connective Tissue Disease

    Hi Journeygirl,

    I recently have been given a specific diagnosis of scarring discoid lupus with asst. connective tissue disease. What I am getting is the discoid lupus will probably just make my skin look bad but will not really harm me much. The conncetive tissue thing is a whole other subject as it is destroying my knees. Of course I am well aware that most of our bodies consists of connective tissue, including the skin. Dr. said it will be more painful than life threatening. I have also seen others on here say they have been dxed with connective tissue disease as well. Some are unspecified like yours, some are called lupus associated like mine. Sounds as if it all acts the same to me.

    Hope you feel better.
    May God Bless and Keep Us All
    Patience 50

     
    Old 01-27-2005, 12:15 AM   #3
    journeygirl
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    Re: Undifferential Connective Tissue Disease

    Thanks so much for your post Patience 50. I'm really hoping that the tennis elbow problem lessens for me. It's hard to do stuff without my hands!

    Is your knee problems due to tendonitis or arthritis? My right hand finger joints swell something awful (feels like icepicks are poking at them some days) but so far, no real joint disfigurement...hopefully RA won't come back positive this time.

    Feel quite lucky tonight when I realized I only had 6 vials of blood taken. Ya see, I'm feeling much more optimistic right now than I have in the past.

     
    Old 01-27-2005, 05:18 AM   #4
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    Re: Undifferential Connective Tissue Disease

    Hi Journeygirl,

    My joint pain is a combination of the two. I have developed osteoarthritis but the bad pain is because the connective tissue disease flared up and during the swelling and stiffness some tearing occurred. I have two small tears in the support muscle of the right knee and now one of the left. I have had some physical therapy to try to build surrounding muscle up to compensate. It has worked to a small degree but much of the pain remains.

    So far my knees are the only joints that have suffered tears like this. Other joints swell up, get hot and very painful sometimes but I've never has tears. My lower joints, shoulders, spine and hands seem to be more prone to this. I think it just picks joints in people. Yesterday I found out that much of my unexplained aches and pains could be from oxygen deficiency during sleep. It appears I have sever sleep apnea. I am going to post on that in a bit too just becasue of what I learned about apnea and it's connection to fibromyalgia.

    Hope you feel better soon. May God Bless and Keep Us All
    Patience 50

     
    Old 01-27-2005, 08:02 AM   #5
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    Re: Undifferential Connective Tissue Disease

    I am diagnosed with UCTD or atypical lupus. I have some positive serologies (ANA, hyperimmunoglobulinia, etc) and some negative autoantibodies. My Rheum. says is is probably lupus but since I do not have all of the 'classic' blood results it is referred to as UCTD, Connective Tissue Disease or Atypical lupus.

    He explained to me that, technologically, Rheumatologists do not have all the diagnostic tests available to them - yet - for testing all of the different (some still not recognized) types of autoimmune antibodies. That surely I have a very high autoantibody that cannot yet be determined because of the lack of testing available. Makes sense to me. By the way, he is considered an expert on lupus and fibro and practices with a major teaching hospital.

    Nonetheless, I have all of the symptoms of non-organ invlovement lupus and feel quite sick. My Rheum. treats me just as aggressively as he would for a 'classic' lupus case. My current meds are MTX, Plaquenil, Prednisone and bextra.

    As long as it is recognized that you do have a connective tissue disease and you are being treated for it, that is really all that matters. May be better from an insurance standpoint as well.

    Wishing you well.

    Mere --

    BTW, I have been sick with UCTD for probably 17 years. It is unknown whether my serologies will change. My first positive ANA was only one year ago!

    Last edited by mere; 01-27-2005 at 08:04 AM.

     
    Old 01-27-2005, 09:13 AM   #6
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    Re: Undifferential Connective Tissue Disease

    Patience,
    I feel for your sleep deprivation. Last year I suffered thru horrible muscle spasms in my back and neck, overall body muscle pain, incredible fatigue and was convinced I had FM. I also had a significant cortisol/adrenal insuffiency and my lack of sleep was really contributing to the issue. I don't have sleep apnea so I was able to take Trazadone to help me sleep. I was desparate for relief and the Trazadone did help me get at least 6 or 7 hours of sleep. Thats when I found out the link between sleep and adrenal/cortisol production. I'm thinking the drug might not be an answer for you since the drug will really relax the muscles in the throat area and cause more apnea but please do check out adrenal insuffiency to see what other methods can help you get some sleep.

    Wishing you well and plenty of quality sleep.

     
    Old 01-27-2005, 09:25 AM   #7
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    Re: Undifferential Connective Tissue Disease

    Mere,
    Your post could have been written by me...well, except the part about your great doctor. Neither of my docs will give me anything other than anti-inflammatories and the list of anti-inflammatories that actually help is pretty non-existant. I'm not allowed to take Advil (although I do sometimes), no Naprosyn, no more Vioxx and Mobic didn't do a danged thing for me. So I'm managing on non-drug methods...yoga for one. Suffering thru is the other.

    I also feel quite sick even tho organ involvement (other than joints/tendons/muscles) and it has been a huge struggle for me to grasp how we can feel so badly but not get any real help. It's horrible for me to think that I'd almost welcome something to show up just to prove there really is something wrong with me. What a catch-22!

    I'm not even sure I've been dx'd with UCTD because my primary looked at his notes and said: "See, he really isn't committing to a specific disease yet because it's undifferenciated". I guess that might be because she isn't up on all the Rheum info or it might be that she considers that a condition and not a specific disease. I don't know. I have a follow up with the Rheumy at the end of March so I can ask him directly.

    I've been dealing with a really high ANA for 4 yrs but many of my auto-immune issues go back about 15 yrs. Hives, alopecia, sulfa allergy, bursitis, arthritis, etc. Oddly neither doc will connect my sisters Myathesia Gravis and my moms Rheumatic Fever (along with suspicious discoid-like skin on her face and arms) as a genetic indicator of auto-immune likelihood for me. Thats also frustrating.

    You all have made me feel so much better that there are others out there like me. Thank you so much for that.

     
    Old 01-27-2005, 09:54 AM   #8
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    Re: Undifferential Connective Tissue Disease

    Hey Journeygirl...

    I was (still am?) diagnosed with Mixed Connective Tissue Disease. Same thing as UCTD. Then I got a diagnosis of Adult Onset Still's Disease. I would test positive for ANA one month (1:640) then the next time it would be negative. Also I would test positive one month for Rheumatoid Factor then the next month would be negative. That is why the diagnosis of Still's. It is a seronegative (meaning negative blood tests) form of Rheumatoid Arthritis similar to Lupus and RA.

    I guess I could eventually be diagnosed with Lupus as well. But, I not too concerned with it right now. I filed for SSDI back last August. Hopefully all my illnesses will get me a favorable determination.

    Take care,
    Joe

     
    Old 01-27-2005, 10:11 AM   #9
    journeygirl
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    Re: Undifferential Connective Tissue Disease

    Hey there Joe.

    My ANA is always positive (1:1640) but yet everything else is negative. I wonder how long it will be before the Rheumy will give me something besides saying "Oh, look, your C3 is low and your ANA is really high".

    I'm not working at the moment but can't get any disability because as far as the medical community is concerned I don't have anything.

     
    Old 01-27-2005, 11:04 AM   #10
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    Re: Undifferential Connective Tissue Disease

    Hello,
    I have heard that term been put on me a few times too. I think all Auto Immune Disease's especially R/A and Lupus all fall under that big term Mixed Connective Tissue Disease. I asked my rhemy once about it when I saw him write in one of his follow-up letters to my family doctor about me. He said that its just the medical term that they use for Lupus and R/A. So I'm not sure if that helps anyone at all. I also know from my own exp especially in woman that your ANA test results can be very different everytime they do blood work because of the chg in our hormones at that time. I wish I knew what my ANA result's have been like when I was first dx to now to see how much it has gotten higher and what not. Here in Canada you dont get copies of any blood work at all like you do here in the States. So I never know what any of the results are really. My rhemy just goes over it with me on our visits but never really tells me what my levels are yada yada! I guess if I really wanted to I could ask for copies but I have never felt the need for them because I'm so lucky to have a really good and caring rheumy that knows that I really do have all these illnesses I have, R/A, Lupus, Sjogrens Syndrome, Von Willebrands Disease and Celiac Disease. I really love reading whatever everyone is going through. I wish I could take all of you people that are having problems with your rheumy and getting a real dx to my rheumy because I know he would do something for you and really care about you and what's best for you. My rheumy works at a teaching hospital and he also does a ton of research and he also is a professor so he is really on the up and up about all of the disease out there... I look forward to reading more of your guy's posts...

    Take Care,
    Lisa

     
    Old 01-27-2005, 11:10 AM   #11
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    Re: Undifferential Connective Tissue Disease

    Oh ya one other thing that I forgot to post about. Once when my rheumy was away for 6 months writing a book, he refered me to another rheumy to look after me while he was gone. She was a realy b**** and she pretty much didnt believe his findings and she sent me to do a whole bunch of more test's. Anyways she sent me to a Neuroaligst because I have a lot of neve pain in my left elbow and in my feet and legs anyways he said that with all the problems that I have and all the illnesses that I have been dx with, he said that they probably still even havent totally found out what is wrong with me totally, and he wouldnt be surpised if it take them another 10 years to find out what's wrong with me. Said that the Connective Tissuse Disease is the only thing that they can really dx with because they just really dont know what the disease really is and that the medical community hasnt been able to fully understand what the disease all are and they are still really in the very early of the learning stages of all Auto Immune Disease.

    Lisa

     
    Old 01-27-2005, 12:13 PM   #12
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    Re: Undifferential Connective Tissue Disease

    Quote:
    Originally Posted by journeygirl
    Hey there Joe.

    My ANA is always positive (1:1640) but yet everything else is negative. I wonder how long it will be before the Rheumy will give me something besides saying "Oh, look, your C3 is low and your ANA is really high".

    I'm not working at the moment but can't get any disability because as far as the medical community is concerned I don't have anything.

    Hey Journeygirl...

    I think you are wrong about not having anything. This is a qoute from the Social Security's "List of Impairments" also known as the "Blue Book"

    5. Undifferentiated connective tissue disorder (14.06) - This listing includes syndromes with
    clinical and immunologic features of several connective tissue disorders, but that do not satisfy
    the criteria for any of the disorders described; for instance, the individual may have clinical
    features of systemic lupus erythematosus and systemic vasculitis and the serologic findings of
    rheumatoid arthritis. It also includes overlap syndromes with clinical features of more than one
    established connective tissue disorder. For example, the individual may have features of both
    rheumatoid arthritis and scleroderma. The correct designation of this disorder is important for
    assessment of prognosis.

    So the Social Security Administration reconizes UCTD as a disabilitating illness. If you want the link to the Blue Book, let me know and I'll send it to you.

    Take care,
    Joe

     
    Old 01-27-2005, 12:39 PM   #13
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    Re: Undifferential Connective Tissue Disease

    Quote:
    Originally Posted by journeygirl
    Mere,
    Your post could have been written by me...well, except the part about your great doctor. Neither of my docs will give me anything other than anti-inflammatories and the list of anti-inflammatories that actually help is pretty non-existant. I'm not allowed to take Advil (although I do sometimes), no Naprosyn, no more Vioxx and Mobic didn't do a danged thing for me. So I'm managing on non-drug methods...yoga for one. Suffering thru is the other.

    I also feel quite sick even tho organ involvement (other than joints/tendons/muscles) and it has been a huge struggle for me to grasp how we can feel so badly but not get any real help. It's horrible for me to think that I'd almost welcome something to show up just to prove there really is something wrong with me. What a catch-22!

    I'm not even sure I've been dx'd with UCTD because my primary looked at his notes and said: "See, he really isn't committing to a specific disease yet because it's undifferenciated". I guess that might be because she isn't up on all the Rheum info or it might be that she considers that a condition and not a specific disease. I don't know. I have a follow up with the Rheumy at the end of March so I can ask him directly.

    I've been dealing with a really high ANA for 4 yrs but many of my auto-immune issues go back about 15 yrs. Hives, alopecia, sulfa allergy, bursitis, arthritis, etc. Oddly neither doc will connect my sisters Myathesia Gravis and my moms Rheumatic Fever (along with suspicious discoid-like skin on her face and arms) as a genetic indicator of auto-immune likelihood for me. Thats also frustrating.

    You all have made me feel so much better that there are others out there like me. Thank you so much for that.

    Do you ever have an abnormal sedementation rate? I know that even with UCTD, it can be very difficult to control the inflammation. At least in my case. Why won't your Rheum. give you antiinflammatories, Plaquenil should at least be tried and is indicated for UCTD.

    Sounds like you need a different Rheum. I do not know your locale but I can direct you toward my Rheum. I live in Maryland and he practices in D.C.

    Believe me, I understand your frustration, it took 17 years for me to find a Rheum. that would diagnose and treat me. It's rediculous.

    I also practice yoga and I think it helps (at least with my head), but it is only supportive - not enough treatment solely. I am not a physician but UCTD is a real illness and it requires medical treatment in most cases. It is my understanding that medical treatment can also keep it from developing into organ-threatening disease.

    Mere --

     
    Old 01-27-2005, 12:45 PM   #14
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    Re: Undifferential Connective Tissue Disease

    Quote:
    Originally Posted by lkavaloff
    Said that the Connective Tissuse Disease is the only thing that they can really dx with because they just really dont know what the disease really is and that the medical community hasnt been able to fully understand what the disease all are and they are still really in the very early of the learning stages of all Auto Immune Disease.

    Lisa
    Same thing my Rheum. said. In retrospect to other diseases, autoimmune disease is relatively new in terms of understanding.

    It is my thought that we will see more diagnostic testing available in the next decade. Hopefully, treatments as well.

    Same for Fibromyalgia. Just in the past 10 years are MD's even acknowledging it as a disease. There are still some that refer to it as a 'wastebasket diagnosis'. I am sure if they suffered from it, they would feel otherwise.

    Mere --

     
    Old 01-27-2005, 05:50 PM   #15
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    Re: Undifferential Connective Tissue Disease

    Lisa,
    Yes, what you've written was pretty much what my Primary said. You know I keep waiting for my ANA to change but it never does...at least not when I get labs done. It's always speckled, always at 1:1640. I'll get my results for this last one in a week or two so I'll check to see if it's changed.

     
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