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  • Connective Tissue Disease... same thing?

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    Old 05-04-2003, 07:57 PM   #1
    StrechedThin
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    Post Connective Tissue Disease... same thing?

    Hi there everyone...

    I am new here. And I am seeking advice in the worst way.

    2 years ago I began to lose my hair. I have been gaining weight, have been very tired, and bloated, and it seems I get sick from most carbohydrates.

    A blood test revealed that I had an abnormally high ANA level.


    I was told this could mean I have a connective tissue disease/auto immunue disease.

    SINCE... I've been to 4 different rhemotologists, a thyroid doctor, and a neurologist. So far... all they've figured is that I *may* have Lupus. Everything else has come back negative. Everything is fine according to them.

    First they though I had PCOS. Nope. Then it was Lupus. Still don't know. Now they're testing me for Celiac disease... which is all coming back negative.

    Now they have me on Plaquenil. And I've heard this will make me lose MORE hair and maybe gain MORE weight. Ugh. And they don't even know if I HAVE LUPUS. There's no test for it afterall.

    Does anyone have any advice? Suggestions? Anything. I am so frustrated. I'm only 29 years old.

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    Old 05-06-2003, 12:18 PM   #2
    Cadet Janice
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    I have high ANA and also have been diagnosed with Lupus. Are yo taking an asprin a day? You should be. I don't have much to offer you except try the medication. I did not loose any hair while I was on it so hopefully you wont either. I was diagnosed with lupus 10 yrs. ago and I am now 33. We are to young to deal with this kind of crap. Oh well I could go off on a vent today. It is a bad day for me.

    Take care and don't give up. I got lucky and the 2nd rehumy I found has turned out to be the best. I am still not doing great but atleast I am alive.

    Doctors are just highly educated guessers.

    Good luck

    Janice


     
    Old 05-06-2003, 01:53 PM   #3
    StrechedThin
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    You know what the WORST part is? All the local Rhumy's are closing up shope. Retiring, or, moving out of the area. We're down to ONE now, and she's not taking any new patients. I got in with her right before that happened. She's not too great, but she's all I have right now. The last one I went to see suggested I have a scalp biopsy done... so I made the appointment. Today, all the test results from the Gastrotologist came back. Negative. All negative. Everything always comes back negative, except for my ANA levels.

    *SIGH*

    -ST
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    Old 02-18-2004, 10:30 PM   #4
    bigheadache
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    Re: Connective Tissue Disease... same thing?

    Juust jumping into this thread to see what you end up finding out. Keep us posted. I just found out I have a high ANA also but I fear the rheumy Iw ill be seeing soon wont find anything wrong other than ANA. I have strang symptoims for an AI disease. Good luck

     
    Old 02-19-2004, 06:00 AM   #5
    peregrine
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    Re: Connective Tissue Disease... same thing?

    Quote:
    Originally Posted by bigheadache
    Juust jumping into this thread to see what you end up finding out. Keep us posted. I just found out I have a high ANA also but I fear the rheumy Iw ill be seeing soon wont find anything wrong other than ANA. I have strang symptoims for an AI disease. Good luck
    There is a condition called UCTD - undifferentiated connective tissue disease. This means that you have symptoms of a connective tissue disease but that it hasn't yet (and may never) declare itself to definitely be Scleroderma, Lupus, Rheumatoid, etc. You might ask your rheumy about it as it is a legit. listed disease and often includes an elevated ANA. Symptoms vary but mine included fatigue, mouth ulcers, joint inflammation and pain and a host of other symptoms related to other organ systems. My ANA, however, never gets high enough to fit into a definite category.

    Last edited by peregrine; 02-19-2004 at 06:01 AM.

     
    Old 02-19-2004, 06:11 AM   #6
    bigheadache
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    Re: Connective Tissue Disease... same thing?

    My symptoms for the past 6 years have been:
    -Fatigue
    -Headache
    -Brain Fog/Disorientation/Psychosis
    -Dizzyness
    -soreness/stiff muscles
    -Extremely dry nose
    -Dry eyes
    -Allergies
    -Swollen/Tender lymph nodes
    -Phlem in throat
    -Laboured Breathing
    -Dry sometimes rashy skin
    -Depression/Anxiety
    -Low body Temperture
    -Indigestion
    -Weight Gain

     
    Old 02-19-2004, 07:28 AM   #7
    peregrine
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    Re: Connective Tissue Disease... same thing?

    Quote:
    Originally Posted by bigheadache
    My symptoms for the past 6 years have been:
    -Fatigue
    -Headache
    -Brain Fog/Disorientation/Psychosis
    -Dizzyness
    -soreness/stiff muscles
    -Extremely dry nose
    -Dry eyes
    -Allergies
    -Swollen/Tender lymph nodes
    -Phlem in throat
    -Laboured Breathing
    -Dry sometimes rashy skin
    -Depression/Anxiety
    -Low body Temperture
    -Indigestion
    -Weight Gain
    This is just my opinion. Your symptoms could be related to the following:
    -Hypothyroidism and/or Hashimotos (check out Thyroid Board)
    -CFIDS (check out the Chronic Fatigue board)
    -UCTD (ask your rheumy)
    You seem to have symptoms that fit into all these categories and you may have more than one thing going on. I actually have all three of these.

    With Lupus you might be more likely to have weight loss than gain, but with CFIDS weight gain in not uncommon. Low body temp often relates to low thyroid and CFIDS, as is true for the rest of the symptoms you listed.

    All the best!

     
    Old 02-19-2004, 10:37 AM   #8
    bigheadache
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    Re: Connective Tissue Disease... same thing?

    Quote:
    Originally Posted by peregrine
    This is just my opinion. Your symptoms could be related to the following:
    -Hypothyroidism and/or Hashimotos (check out Thyroid Board)
    -CFIDS (check out the Chronic Fatigue board)
    -UCTD (ask your rheumy)
    You seem to have symptoms that fit into all these categories and you may have more than one thing going on. I actually have all three of these.

    With Lupus you might be more likely to have weight loss than gain, but with CFIDS weight gain in not uncommon. Low body temp often relates to low thyroid and CFIDS, as is true for the rest of the symptoms you listed.

    All the best!
    I do not have thyroid problems. I had my TSH free T4 and thytroid antibodies tested all are within normal range. Even though I was sure this was my problem due to my symptoms.

    How are you being treated for CFS?

    What is UCTD and how are you being treated for it?

     
    Old 02-20-2004, 04:36 AM   #9
    peregrine
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    Re: Connective Tissue Disease... same thing?

    Quote:
    Originally Posted by bigheadache
    I do not have thyroid problems. I had my TSH free T4 and thytroid antibodies tested all are within normal range. Even though I was sure this was my problem due to my symptoms.

    How are you being treated for CFS?

    What is UCTD and how are you being treated for it?
    There is no known treatment for CFIDS. I would visit the CFIDS foundation site for more information. I have had this for 11 years and have tried different alternative things during this time, some of which help somewhat. But I have found nothing to date (and I have tried a lot of things!) that will eliminate "flares", i.e. exacerbation of symptoms.

    I have already commented about UCTD (a few threads up). I was offered Prednisone (a steroid) and Plaqiunal (which can cause damage to the retina of the eye) by my rheumy. I refused both as I feel that allopathic medications only contribute to other problems down the line. Again, I speak only for myself.

     
    Old 03-23-2004, 02:58 PM   #10
    Mistigo
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    Re: Connective Tissue Disease... same thing?

    It's been almost 4 years since it was first discovered that I had any sort of autoimmune problem. I had just got over a bout of Fifth's Disease a few months prior, and I had been having weird problems. I went into my general doc and he started asking lots of questions (think he was suspicious of an autoimmune problem) and ran tests. Came back a low ANA, but +. I think it was only like 160 if that. My ANA has gone up dramatically since. My last test of it showed me to be at 2560!

    Anyway, I am on my 2nd rheumie and he is GREAT. I've been through the you "might have lupus" thing too. At this point they have classified me as MCTD (pretty much the same as UCTD) - muliple connective tissue disorder and I have hypothyroidism. I have symptoms of rheumatoid arthritis and occasional symptoms of lupus.

    I had big problems last summer with gastrointestinal issues and had to go to a gastroenterologist to "fix" them. Basically that turned out to be Inflammatory Bowel Disease (not to be confused with Irritible Bowel Syndrome). Yet another autoimmune issue.

    Basically all of these things are related. Lupus, fibromyalgia, hypothyroidism, RA, addison's, etc. They are all autoimmune disorders. If you have 1 disorder, you may have another... or overlapping symptoms of various autoimmune probs. Symptoms will come and go. At one point it may seem like you match the symptoms of lupus, then not. Point is, the big picture - an autoimmune disorder.

    They started me out on prednisone and then plaquenil. After weaning me off the prednisone, the plaquenil wasn't working by itself, so they put me back on the prednisone (kept me on plaquenil as well) and added methotrexate. So far, so good.

    I haven't had any side effects, but I'm sure that's just because my body somehow can handle the drugs they have me on.

    All I can suggest is keep trying to find a good doctor that will listen to you and be willing to try different things to help you to where you will feel "normal." Also try to read up on autoimmune disorders, but through valid information such as medical journals or books. Another suggestion is joining AARDA (American Autoimmune Related Diseases Association) or getting information from them. They have info. on ALL autoimmune disorders as well as other helpful information.

     
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