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    Old 03-23-2007, 01:54 PM   #1
    tiff-cher
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    "unspecified" collagen disorder

    Hi
    I have Fibromyalgia but have just been diganosed with an "unspecified" collagen disorder too. Is there anybody who knows anything about this? I have a general understanding, but I think it would help to hear from somebody else. Any input would be great!
    tiff-cher

    Last edited by tiff-cher; 03-23-2007 at 01:54 PM.

     
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    Old 03-24-2007, 07:06 AM   #2
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    Re: "unspecified" collagen disorder

    Tiff-cher, I don't know too much about collagen disorders, but I do know there are a lot of different kinds, and when doctors can't nail down one with bloodwork, they assign you with undifferentiated collagen or connective tissue disorders. Which means that you show signs of some of the disorders but that your symptoms overlap one or more of the types. You may have some signs of Lupus but also some signs of polymyositis at the same time. So until more symptoms develop (if ever) they don't give you a firm dx on one of them until they are absolutely sure. I've always read that if you have overlapping symptoms between multiple connective tissue disorders, that this works in your favor as opposed to having severe defined symptoms of just one such as lupus. Obviously they've done a bunch of bloodwork on you right? What are your main symptoms?

     
    Old 03-24-2007, 07:46 AM   #3
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    Re: "unspecified" collagen disorder

    Nancy,
    I do have Fibro too...but, I have the rash on my face I have cdd and ldd,chronic pain, concentration problems, forgetful, can't sleep, I could go on and on. Yes he did blood work. I was looking at on MRI reports yesterday and the one for my lumbar said benign sacral meningeal cyst at the s3 level and the cerv one said low grade stenosis and minimal facet arthrosis. My doc says I have probably had this for years, but he said the good news is my organs are ok. He put me on pain meds and said we will do blood work once a year.
    thank you for your response!!
    tiff-cher

     
    Old 03-24-2007, 08:02 AM   #4
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    Re: "unspecified" collagen disorder

    Tiff-Cher - I have been diagnosed with Fibromyalgia as wells as UCTD. I have a positive ANA and a postive SSA but every other test they have ran has been negative. I do not really have joint pain or swelling, no rashes, no dry eyes or mouth, etc. Very hard case I guess but I am glad to not have any major signs going on especially organ involvement. Hopefully, with a healthy lifestyle I can avoid this ever developing into something more but I know there may be other factors that I cannot control. As for the Fibromyalgia, I have many of the symptoms along with the tender points. I think it's definitely my biggest battle right now rather than the UCTD.

    Oh, and I also was diagnosed as Vitamin D deficient and have been on supplements for about 4 weeks now - I know this is linked to muscle/skeletal pain so I'm hoping to this is going to help. It takes about 6 weeks before the Vit D builds up in your system and is converted to the active form. I have noticed a slight decrease in some of pain since the Vit D so maybe I'll see even more effect after being on it for a longer period.

     
    Old 03-24-2007, 08:23 AM   #5
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    Re: "unspecified" collagen disorder

    I am not familiar with this disorder but I to am going through a wait and see process also. I had drug induced lupus and my blood work still indicates one positive antibody - centromere. I have overlapping symptoms and nothing is specific to a certain disease.
    They are treating me now as if it is fibro and waiting to see if scleroderma develops in the future. They believe that they may have caught the positive as fluke and I may develop additional symptoms later or it will go away like the other positives as a result of the drug induced lupus.
    The wait and see game is stressfull and with every blood test you wonder will this be the one that will give me the answer to what is going on.
    How long have you been having symptoms? How long have you been seeing a doc about your condition? Is your doc a gp or a rheumi?
    The only reason I ask is that I have been going through this for 3 years. I currently changed rheumi's to help find an answer. So far new meds and different tests which have answered some outstanding questions for me.
    You may want to check out the lupus thread. Also, a recommended book, if you don't already know about it, is Dr Wallace - The Lupus Book. It has alot of info about related diseases. He also has a website which is a mini version of the book.
    Good luck!

     
    Old 03-24-2007, 09:50 AM   #6
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    Re: "unspecified" collagen disorder

    Gunner, we sure have a lot in common (except the drug induced Lupus). My dr's have given me the same diagnosis: fibro but watching for scleroderma development. It's not fun in limbo land but I suppose it could me much worse. Mine has been going on for 2 1/2 years. I'll definitely look into that book, thanks!

     
    Old 03-24-2007, 09:50 AM   #7
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    Re: "unspecified" collagen disorder

    Gunner, we sure have a lot in common (except the drug induced Lupus). My dr's have given me the same diagnosis: fibro but watching for scleroderma development. It's not fun in limbo land but I suppose it could me much worse. Mine has been going on for 2 1/2 years. I'll definitely look into that book, thanks!

     
    Old 03-24-2007, 01:44 PM   #8
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    Re: "unspecified" collagen disorder

    Nancy-
    Nice to connect with someone with a similar situation. Dr Wallace's book is quoted alot on the lupus thread. It has alot of stuff and I got alittle overwhelmed when I started reading it. It did help me alot when it came to talking to the doc and understanding what he was saying.
    Look forward to talking to you again.

     
    Old 03-25-2007, 09:06 AM   #9
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    Re: "unspecified" collagen disorder

    gunner00,

    I had a PA and a PT tell me about 5 years ago that they thought I had Fibro. My PA was going to send me to a Rheumy but we were in the process of moving from MI back to OK, and I never saw one. Then when we got back to OK I didn't have ins for 4 years. Now I have ins and a doc, he is and internist and I have been seeing him since January. I will check out the book you talked about too.
    thanks,
    tiff-cher

     
    Old 03-25-2007, 02:14 PM   #10
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    Re: "unspecified" collagen disorder

    Just throwing in my two cents worth. I too have had the positive blood tests and then negative tests. Rhuemy first thought it was lupus and waited for more symptoms to develope before officially calling it by the lupus name. It has been over three years now and my rhuemy says that I will probably never cross that line from CTD to lupus since it has been so long. He does however go into overdrive when I go in with increased joint pain and a few other odd symptoms. He does all the blood and urinenalysis and checks everything like he did the first year and a half. Fortunatly all blood work comes out ok and he searches for some other way to alleviate the joint pain.

    I also recommend the Dr. Wallace book, I learned about it from the lupus board and it is helpful in sorting things out sometimes and helping to form questions to ask your doc when you visit.

    Just thought you may want to hear my rhuemies opinion on this long term waiting to see if anything else developes. He says it is possible but not likely to happen, but it still doesn't eliminate the fact that something is wrong to be causing my pain.

    Glojer

     
    Old 03-26-2007, 06:57 AM   #11
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    Re: "unspecified" collagen disorder

    Glojer,
    I will be looking for that book. I have about 4 Fibromyalgia books and they have been helpful, but I think the Lupus book will help me too. I'm back to the point where I"m frustrated, maybe because the last week has been so painful. The last few weeks before that I felt great, and now it is raining here so will probably be worse today...thanks for the input!!
    tiff-cher

    Last edited by tiff-cher; 03-26-2007 at 11:42 AM.

     
    Old 03-26-2007, 01:16 PM   #12
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    Re: "unspecified" collagen disorder

    Glojer - your post is much more than 2 cents. THat does really make me feel better regarding your rheumie's view on an official dx over time. But I'm sure as you've realized, that almost makes it harder to be treated sometimes because tests ARE negative and they don't know what you have. Frustrating. I've been in a pretty bad flare since January, hoping it's winding down. Right now I'm just trying to keep my hands/arms/feet from falling asleep and tingling if there's any pressure on my arms (like sleeping) or on my legs (like sitting).

     
    Old 03-26-2007, 03:36 PM   #13
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    Re: "unspecified" collagen disorder

    Tiff-cher, I agree this past week has been a bad one. This disease never ceases to amaze me, how I can be good and then suddenly one day I'm down for the count. I'm in Mo. and we have had the rainy, cloudy days that have turned very warm. I always like to blame it on the weather.

    Nancy you are right on the not knowing how to treat you. It is a double edge sword, glad not to have the bad diagnosis but frustrated because there is no real explanation of why I hurt.

    Glojer

     
    Old 03-27-2007, 07:08 AM   #14
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    Re: "unspecified" collagen disorder

    glojer,

    I went to the library yesterday and found the book that you recommended. I had a little bit of time to look through it...I think it will help!! Thanks,
    tiff-cher

     
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