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Thread: I'm so confused....

  1. #1
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    Default I'm so confused....

    I just got back from an appt. w/ my Internal Meds. Spec.

    I was diagnosed w/ "Mixed Connective Tissue Disease (lupus and Fibro)."
    The above was how the Doctor wrote it.

    I had a very high positives w/ the ANA, Anti Double Stranded DNA
    and RNP Extractable Nuclear Antigen tests. I had a negative Anti Smith test,but the numbers were high.

    He is concerned w/ some other issues I'm having, so a C-4 test was done tonight.

    I don't feel especially bad, mainly just tired and my knees hurt. I have a weird rash on my face, but not the 'malar rash', it looks like it's going away.

    He asked what my main concerns were and I told him fatigue and joint pain. He wrote a prescipt. for Methotrexate, but changed it to Savella.

    My X-rays looked good. Slight inflammation, but wants me to have an MRI.

    I'm reading conflicting things on Mixed connective tissue disease. Do I have 2 over lapping diseases or just symptoms of the 2?

    Sheesh, I'm not any better off tonight than I was this morning.... or am I because I've been diagnosed?

    Think I'm gonna have spaghetti, chocolate and some sweet lovin' from my boys and sort thru it!

    Any thoughts would be greatly appreciated.
    Last edited by 2lilpeas; 02-15-2010 at 01:45 PM.

  2. #2
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    Savella is considered a GREAT medication for fibro AND if you have lupus, savella also has good tolerance for fatigue and pain. I can see your doc being conservative until more testing is done. One of the most frustrating things in the beginning is trying to get a grip on things and being proactive yet having doctors blow you off time and time and time and time again.

    If you have lupus you need to be on more than just savella. If you do not have lupus, the preventative drugs will do you no good. Which is why they like to be conservative and see if the savella helps. Bc harming your liver will NOT do you any good. In the beginning, the best thing to do is just give it a good 4-6 months of active rest, eating well, taking your savella, drinking water, and waiting to see if it chills out without a flare.

    If you get any "flares" and your doc thinks it is indeed lupus, you might consider asking why they aren't referring you to a rheumy and getting on preventatives. Id not be so sick today if I'd gotten on preventative medication. There is a fine balance between worrying and stress and trying to micromanage your own doctors... and self-advocating, knowing your own body, being honest about how you feel, reporting your symptoms, and sometimes-- just keep goign to the doctor and askign to see a rheumatologist until you find the one that "clicks" with you and you feel like you trust.

    Good luck. And really- the savella does work like a charm. Especially if you're even a bit overweight-- it tends to take off a few extra pounds... if you are underweight- watch out and make sure you eat. It tends to make you not as hungry. Good luck!

  3. #3
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    Thanks for your reply...
    I had to stop taking Savella after 3 days. Day 4 came with a migraine, nausea and a racing heart.
    I went to an Urgent One (Saturday). My blood pressure was very high, 160/104.
    I've had HBP for the last 2.5 years (came w/ all sorts of other *odd* symptoms). I've been able to control it w/ Benicar.
    I'm going back to my General Practioner tomorrow. We've found a Rheumatologist that I've been able to make an appt. with for the 18th.

  4. #4
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    Welcome to WHL, 2lilpeas,
    We've been greeting a lot of people with MCTD lately. Mine is Lupus, RA, Psoriasis and Sjogren's. I'm taking Plaquenil and MTX injections, as are many of our members. Like you, I have fatigue and sore knees. The meds are helping me with the fatigue a lot, but my knees are still very painful. I found that the rash on my face and the psoriasis sores in my scalp have improved dramatically.
    We all seem to go through a lot of frustration trying to find out exactly what is wrong with us and finding the right combination of drugs to help us. I finally found a great rheumy in Texas and then had to move to California. I'm still figuring out my new rheumy - not sure if she's a good one or not.
    Keep coming back to share with us. I'll be very interested to see how your doc deals with your issues.
    OK, I'll bite. Are your boys children, cats, dogs or a combo? My boys are a sweet hubby and two cats - the kids are all grown-up and on their own by now.
    Hugs,
    Marla

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