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Old 06-07-2010, 11:10 AM   #1
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MCTD and Raynaud's

Raynaud's is a part of mixed connective tissue disease isn't it? I think my daughter might have this. Her hands and feet stay very cold and she has these episodes where they turn blue. Her doctor noticed it one day and checked the pulse in her feet and that was okay and we never did find out anything about it. She is also having joint pains in her knee and foot and I think she might be in an early stage of this autoimmune disease.

I have past positive ANA's of 1:320 and my last one showed a positive direct ANA with RNP being 7.3 (normal being 0.0-0.9). I have the symptoms of the condition of Lupus, and bladder problems but no kidney disease (have only had past stone formation). I do not have Raynald's or the other overlapping disease, forget what that is, but I still believe I have either MCTD or Lupus.

Muscle & joint problems are very common in my family. I believe (with all my heart) our conditions are auto-immune.

My PCP and his PA says my ANA is meaningless unless I test positive for RF or ESR. But neither doctors are specialists in these diseases and the Rhematologist I saw about 8 years ago said I had early stages of Lupus even with a normal RF/ESR and no auto-antibodies. He said the disease would show itself later on in my blood work.

I think this is where the confusion kicks in with my PCP. From what information I can find, the ANA is meaningless without a positive RF or ESR, but with a positive autoantibody (mine being RNP), that means you either have the disease or you have the autoantibodies present to get the disease. From my understanding, that is a positive result and cannot be false positive.

Only the ANA itself can produce false positive results, not the autoantibodies, from all the medical literature I can find on this.

I have suffered for 13 years and I haven't had anything that really helped until recently when I was put on Mobic. Then that got taken away last week because I have an ulcer, though the Mobic did not cause it. I have done nothing all these years but worsen. My diagnosis has been Fibromyalgia.

I would love to here you all's opinions on this. I am scheduled to see my old rhemy in like 4 mths.

Do you guys think it would be more helpful in getting the diagnosis if my doctors knew my daughter could have Raynald's?

 
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Old 06-09-2010, 02:04 PM   #2
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Re: MCTD and Raynaud's

I just had my ANA repeated and it was positive again but the RNP was lower this time, like 3.4 but still high abnormal. I took Mobic for a month and a kick butt anti-malarial antibiotic, and it was helping me feel better, I think the test results speak for themselves.

Do you all notice your autoantibodies flunctuate during the course of your flares (like the anti-ds-dna, sm, rnp, whatever else there is) ?? Or just the titer. My ANA results don't give the titer to the ANA, just says it's positive abnormal.

 
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Old 06-11-2010, 10:41 AM   #3
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Re: MCTD and Raynaud's

Hi I too have been diagnosed with MCTD which is the combination of several diseaess with many symptoms. One site said it is classically" considered as an "overlap" of three diseases, systemic lupus erythematosus, scleroderma, and polymyositis with features of each of these three diseases. Also that you must have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in blood for diagnosis. I had a high ANA and RNP plus high CPK with joint/ muscle pain/Swollen fingers/ hands, lung involvement, GERD, difficulty swallowing anemia and pleurisy. Raynauds is usually seen in MCTD but I do not have it. The doctors say that MCTD is not inherited nor genetic. I hope this helps as I am learning too about MCTD.
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Old 06-11-2010, 03:50 PM   #4
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Re: MCTD and Raynaud's

Connective tissue disease can be hereditary but your parent could have one type and you could have another. I took my mom today and she was tested. But I think it is genetic regardless of what is said. I know that Lupus is more of a genetic disorder. My rhemy was trying to determine with me back years and years ago if autoimmune disease ran in my family, that helps the diagnosis. My daughter has symptoms of Raynaud's and her knee is swelling on her now, she also has other joint problems. She's 15. She's heading right down my pathway.

 
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Old 06-14-2010, 08:18 AM   #5
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Re: MCTD and Raynaud's

Hi, this the info I read about. I guess in some ways you are right. I do not have relatives with any autoimmune disoders. My rheumie told me it was not hereditary and not genetic but when researchig I found this: "MCTD is a rare disease. In most cases the age of onset lies between 20 and 50 and 8 to 9 out of 10 patients are female. MCTD is not hereditary. There can be a difference in the diseases genetic susceptibility: the same susceptibility often seen in lupus, rheumatoid arthritis or Sjogrens Syndrome, can occur in combination."
External factors may also play a role. Some cases of MCTD have been described after the patients had worked professionally with PVC (polyvinylchloride).
Thanks for a new understanding. I am going to look into my family history a little more.
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Last edited by grace70; 06-14-2010 at 08:19 AM.

 
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Old 06-14-2010, 08:15 PM   #6
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Re: MCTD and Raynaud's

My mom had her ANA checked and it was negative (she was dxd with osteoarthritis). I was a bit surprised by that. I'm taking my 15 yr old daughter thursday to get a bone scan or xray done where her knee keep swelling. They said they'd have to do blood work on her in order to see if she has raynaud's but she is petrified of having blood work done. I think it's arthritis, not sure, but hopefully a scan will show. It's very odd, that's happening to her at her age. I can tell she's mad at me, she said she didn't want to turn out to be like me, her behavior has spinned out of control since the doctor took me off of Mobic and I've been feeling worse. I've been so stressed, I had a nervous breakdown. They make fun of me for being sick, like calling me lazy, no consideration or sympathy whatsover even if I'm balling crying. My ex gripes because I don't get the housework done. My total lack of energy and muscle pain is such a joke to them. I called my dr and told them what happened and told them I need medication to control my Fibro. I doubt though that being treated for the wrong disease is going to be helpful at all. I've been on pain meds, narcotics, muscle relaxants, none of it was helpful. It really bothers me that he is ignoring my ANA results, I know they are not meaningless.

 
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Old 06-15-2010, 09:04 AM   #7
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Re: MCTD and Raynaud's

I am so sorry to hear about your daughter. I got my diagnosis a year or so ago when I was 37. It must be hard for her and you.
I know about the joint pain/swelling, fatigue and muscle weakness. I cannot take an NSAID so my doctor gave me a topical cream - Voltaren Gel for joint pain and swelling. She also gave me patches to apply to painful swollen areas. They do help. I do get regular B-12 shots and pink lady injections its -B 12 and corticosteriod to help with the inflammation. Did you or your daughter get their CPK and enzyme levels tested. My was high due to muscle damage. I also got an EMG test. I was told since MCTD does affect connective tissue it does affects joints and muslces.
Oh and also my doctor prescribed an antidepressant to help with the emotional effects, (the severe depression/crying malaise and feeling useless). It can be short-term. It helps with energy too. You are not alone when it comes to unsympathetic husband. Men can be jerks.
Good luck, I hope everything works out for the best and you get some answers soon for you and your daughter.
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Last edited by grace70; 06-15-2010 at 09:11 AM.

 
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Old 06-15-2010, 09:46 AM   #8
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Re: MCTD and Raynaud's

unsympathetic ex-hubby more like it (LMAO) but after I told him how I lost it over the weekend, he gave our daughter $20 to clean the house and layed off. i'm starting to feel better with my mood. i take Lexapro, it isn't helpful with my physical problems however. i think it makes my fatigue worse.

I cancelled my councelling appt (not going ) but I think the nervous breakdown issue was ulcer induced stress, however that be possible, but when the pain was really bad, I could not deal with anything.

I'm not sure they did a CPK or enzyme study. He said he was repeating the ANA, checking the ESR & RF factor. I don't think my joints are damaged, my muscles just pretty much ache/hurt. I definetly haven't had a EMG. Well no, my daughter won't let them do blood work on her. (Hard head) you can't talk her into it.

I do the B-12 shots too but I don't think it's helping, my tingling sensations have been extremely bad.

 
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Old 06-23-2010, 06:16 PM   #9
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Re: MCTD and Raynaud's

A doctor I talked to, (not my PCP), told me go to another facility and have my ANA checked, and where it was still positive, he thought I had autoimmune disease. Talked to another doctor today. She said that if she were me, she'd go to a rhematologist for an evaluation because it sounds like I have an autoimmune disease but general practicioners are not qualified to diagnose it as my dr did, thinking its fibromyalgia instead. She also went on to mention how Lupus can occur without a positive ANA so she just has to go by clinical symptoms sometimes. She thinks my daughter may have something like rhematoid arthritis or Lupus, developed an AI disease from me, but she wouldn't let her do the blood work to find out.

 
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