Posted 2/21/2011 10:59 PM (GMT 0)
perhaps people weren't replying because they didn't know what MCTD is. I googled it- it's mixed connective tissue disease.
Which sounds an awful lot like... lupus. Sometimes these fine distinctions can be really annoying and you jut want to yell TREAT ME ALREADY! because you need some relief. But also there is this other need to get some kind of answer, a proper diagnosis, so you know what you're dealing with. Esp. in the case of something like prednisone, which makes one condition worse and another better.
re: lupus, back in the day (1992) when I was getting diagnosed, they said there was no definitive blood test for lupus; they just wanted you to have 4 of the 11 classic symptoms (see the LFA website to see that list) http://tinyurl.com/4s6rf6e
Placquenil is an anti malarial and seems to be relatively harmless and effective for people with lupus which does not affect major organs. It can however, affect your eyesight, so if you go on that drug, have you eyes monitored regularly for changes at an opthamologist.
If you were to go an alternative medicine route instead of - or in addition to- the prescriptions (I combined the 2 approaches), I have found relief from acupuncture (from an acupuncturist, not an MD; acupuncturists receive years of training in the subject, vs. a weekend clinic), massage, chelation therapy (a detox method, really worked well for me), detox herbs and teas, qigong (a lot like tai chi, you can do it at home, costs nothing but a little time and effort).
When I was first diagnosed, I could not find a support group nearby but there were 4 women in my church with lupus/ lupus-like illnesses so we started our own group in the church basement. it was so nice to be able to speak openly about the illness, because yes the family can't deal with it. we tried in our group to also spend time talking about things that were helping us, not just sitting around complaining. although that was allowed, to a degree.
You are wise to come onto this board and ask for help- very proactive. Don't be shy- you can join more than one group. Get all the help you can. I also was participating in wehavelupus.org for a while.
Carla