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    Old 12-07-2015, 05:35 PM   #1
    student4ever
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    Undifferentiated Diagnosis

    I finally saw a rheumatologist and have been diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I've also started taking Plaquenil.

    Positive Labs:
    ANA - 1:160 speckled
    CRP - 9.08
    ESR - 25 (I think)
    anti-histone - 2.1

    Other issues:
    Raynaud's (mostly feet)
    Slowed GI motility (from the esophagus all the way down)
    Sores on scalp (from being so dry maybe?)
    Severe fatigue/exhaustion (sleeping 12+ hours a day, even on days I work)

    While I am happy to finally have a diagnosis and a possible treatment to slow things down, I'm annoyed at having to explain what it is and then get "Oh, well at least you don't have lupus."

    How have others dealt with people minimizing what you have because you don't fit nicely into a diagnosis?

     
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    Old 12-09-2015, 10:38 AM   #2
    luca689
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    Re: Undifferentiated Diagnosis

    UCTD is, in fact, a diagnosis and can be treated. I was originally diagnosed with it and immediately prescribed medication for it. I never worried about people who do or don't "get it" or want to make it into something else less or more. It's not a competition nor am I "seeking" sympathy and I simply don't have time for those sorts of people. LOL I feel that someone else should respect me enough to accept my explanations or if not, move along to annoy someone other than me.

     
    Old 12-09-2015, 03:17 PM   #3
    student4ever
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    Re: Undifferentiated Diagnosis

    Quote:
    Originally Posted by luca689 View Post
    UCTD is, in fact, a diagnosis and can be treated. I was originally diagnosed with it and immediately prescribed medication for it. I never worried about people who do or don't "get it" or want to make it into something else less or more. It's not a competition nor am I "seeking" sympathy and I simply don't have time for those sorts of people. LOL I feel that someone else should respect me enough to accept my explanations or if not, move along to annoy someone other than me.
    I guess this is the attitude I need to adopt. I thought working in the health field would have my coworkers more understanding. Oh well.

     
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    Old 12-10-2015, 12:54 PM   #4
    VeeJ
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    Re: Undifferentiated Diagnosis

    Just want to say HI & that there's a bright side to the UCTD dx: you're on the radar, which I see as better than getting no dx and no treatment. You could tell people, if they even warrant an explanation that with UCTD, your doctor is *still monitoring* a broad range of AI's: lupus, scleroderma, RA, primary Raynaud's, polymyositis, and mixed connective tissue disease.

    Plaquenil is slow-building and can take 4-6 months to reach its FULL effect. Of course, you could feel some benefit kicking in earlier.

    There are several terrific lupus hardcovers you can borrow from most libraries. In one of them, the (famous) author discusses a 5-year study of people who were initially dx'ed with UCTD. Their outcomes after 5 years were as above---PLUS some were still UCTD, and some had no discernible disease whatsoever.

    We're human, we want a tidy dx, so I totally understand how this feels "fuzzy", but I'm really glad you're getting help and follow-ups. Keep us posted, OK? Sending hugs.

     
    Old 12-23-2015, 07:49 PM   #5
    Danitom
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    Re: Undifferentiated Diagnosis

    my daughter who is 20 years old also has Undifferentiated connective tissue disease. She has a positive ANA, dsDNA and SSA. She is on the lupus and sjogrens spectrum. We have found that most doctors (aside from her rheumatologist) raise eyebrows more when we tell them the positive labs rather than (or along with) the diagnosis. I know she sometimes feels like people think she is exaggerating the situation when she is in a flare and just cant "keep up" All I know to say is you have to do whats best for your health and if you need a break or whatever then just do it and don't worry about what others think because in the long run, you will be the one to pay for pushing to hard. ((HUGS))
    **My daughter is also in the medical field. She is a CNA and works 3 twelve hour shifts a week** Her one year old son has recently been diagnosed with SJIA**

     
    Old 12-24-2015, 08:38 AM   #6
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    Re: Undifferentiated Diagnosis

    I find it interesting that your anti-histone antibody is elevated. This usually indicates a drug induced connective tissue disorder. I know there are exceptions to that, but were or are you on any medications prior to your diagnosis that could be related? There is a long list of drugs that can induce lupus-like illnesses, including UCTD. Stopping the offending drug usually lets the illness remit. Since more people are becoming aware of lupus, it might help to explain UCTD as "similar" to lupus, which will stop some of the insensitive comments in response. These diseases defy simple explanation, and most people are lost after they hear the first sentence if you get technical. I would save more detailed explanations for those who truly show an interest and are close to you and need to know more detail.

     
    Old 12-28-2015, 02:57 AM   #7
    student4ever
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    Re: Undifferentiated Diagnosis

    Quote:
    Originally Posted by VeeJ View Post
    Just want to say HI & that there's a bright side to the UCTD dx: you're on the radar, which I see as better than getting no dx and no treatment. You could tell people, if they even warrant an explanation that with UCTD, your doctor is *still monitoring* a broad range of AI's: lupus, scleroderma, RA, primary Raynaud's, polymyositis, and mixed connective tissue disease.

    Plaquenil is slow-building and can take 4-6 months to reach its FULL effect. Of course, you could feel some benefit kicking in earlier.

    There are several terrific lupus hardcovers you can borrow from most libraries. In one of them, the (famous) author discusses a 5-year study of people who were initially dx'ed with UCTD. Their outcomes after 5 years were as above---PLUS some were still UCTD, and some had no discernible disease whatsoever.

    We're human, we want a tidy dx, so I totally understand how this feels "fuzzy", but I'm really glad you're getting help and follow-ups. Keep us posted, OK? Sending hugs.
    Thanks! I'll have to check out some books.

    Definitely not feeling anything from the Plaquenil yet, though it's only been a month.

    Quote:
    Originally Posted by Danitom View Post
    my daughter who is 20 years old also has Undifferentiated connective tissue disease. She has a positive ANA, dsDNA and SSA. She is on the lupus and sjogrens spectrum. We have found that most doctors (aside from her rheumatologist) raise eyebrows more when we tell them the positive labs rather than (or along with) the diagnosis. I know she sometimes feels like people think she is exaggerating the situation when she is in a flare and just cant "keep up" All I know to say is you have to do whats best for your health and if you need a break or whatever then just do it and don't worry about what others think because in the long run, you will be the one to pay for pushing to hard. ((HUGS))
    **My daughter is also in the medical field. She is a CNA and works 3 twelve hour shifts a week** Her one year old son has recently been diagnosed with SJIA**
    Yeah, my coworkers were definitely thinking I was exaggerating my fatigue, even saying I shouldn't be taking caffeine pills to stay awake for work. Without them, I can stay awake for about 3-4 hours. Then they were questioning my sleep habits, exercise, etc. Now they are a little more understanding.

    Quote:
    Originally Posted by ladybud View Post
    I find it interesting that your anti-histone antibody is elevated. This usually indicates a drug induced connective tissue disorder. I know there are exceptions to that, but were or are you on any medications prior to your diagnosis that could be related? There is a long list of drugs that can induce lupus-like illnesses, including UCTD. Stopping the offending drug usually lets the illness remit. Since more people are becoming aware of lupus, it might help to explain UCTD as "similar" to lupus, which will stop some of the insensitive comments in response. These diseases defy simple explanation, and most people are lost after they hear the first sentence if you get technical. I would save more detailed explanations for those who truly show an interest and are close to you and need to know more detail.
    I too found it interesting that anti-histone was elevated. The only medications I take are Singulair, birth control, Zyrtec, and Neurontin, none of which are on the list. I also take some supplements such as vitamin D. My symptoms started mostly before any of the above though.

    Pleurisy in ~2002.
    Blood in the urine since at least 2005.
    GI motility issues ever since I can remember.
    Etc.

     
    Old 04-13-2016, 07:31 PM   #8
    maiyen
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    Re: Undifferentiated Diagnosis

    Hi student4ever,

    I know this post is a few months old, but I just wanted to comment that anticonvulsants are on the probable list of medications for drug induced autoimmune diseases such as lupus and since Neurontin is an anticonvulsant perhaps it's something to check into further? Of course I am not a doctor, but just info that I've come across while doing my own research (I've been diagnosed with UCTD as well).

    Take care!

     
    Old 02-20-2018, 01:54 PM   #9
    Pugluv
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    Re: Undifferentiated Diagnosis

    I can relate to your frustration.........I was diagnosed with Chronic Fatigue Immune Dysfunction and Fibromyalgia 30 years ago when these "vague" disorders were in their infancy. After years of basically normal blood test results, two years ago I tested positive for ANA, RF, Low/RBC, elevated IgG, and some others I can't remember off hand. My rheumatologist diagnosed me with UCTD a year ago. Although, this diagnosis is at least backed up by abnormal blood work and diagnostic tests, it still can be confusing and vague. I noticed that you mentioned you had esophageal issues. One of my many very distressing symptoms that started recently is that I feel like I have a lump or large clump of phlegm in back of my throat, making me feel anxious.....I constantly clear my throat and swallow trying to get rid of the sensation (Globus sensation). I was wondering if you experience this symptom as well?

     
    Old 02-21-2018, 03:39 AM   #10
    student4ever
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    Re: Undifferentiated Diagnosis

    Quote:
    Originally Posted by Pugluv View Post
    One of my many very distressing symptoms that started recently is that I feel like I have a lump or large clump of phlegm in back of my throat, making me feel anxious.....I constantly clear my throat and swallow trying to get rid of the sensation (Globus sensation). I was wondering if you experience this symptom as well?
    Pugluv,
    I don't. I'm sorry What do your doctors have to say about it?

     
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