need a little support

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the gasser
New Member


Date Joined Feb 2011
Total Posts : 9
   Posted 2/21/2011 4:05 PM (GMT -6)   
i'm new here. I Recently had a 3 month period of swollen glands, cold sweating, night sweats, low grade temp, achey joints, general malise. My GP ordered some general labs and my ana was pos as well as my anti RNp but it was only slighly high (1.9). However, i had been given some steroids recently and the mds were afraid that was why they were so low. I saw a Rheumatologist and he repeated the labs 2 weeks later along with several tests.  I saw him today and he said everything else was normal except my anti RNp was still high ( 2.9 now). still fairly low for what i can tell but nevertheless positive. My sympoms are better since the last dose of steroids. He said that at this point I am in the waiting game to see if things go away completely, keep on as they are, or worsen into a full blown MCTD. He mentioned Paquinal but wanted to to read about it and see what my labs looked like in 3mo. I'm a nurse and this waiting game is killing me... do i have something or not?!? anyone here have a similar experience? Anyhow have theese labs and turn out  to get MCTD? I am only 30 and want another baby.. I'm scared!

the gasser
New Member


Date Joined Feb 2011
Total Posts : 9
   Posted 2/21/2011 10:20 PM (GMT 0)   
i've noticed several people are reading this but nobody is answering.. please.. any advice you can give is helpful! Just tell me what you went through. My family thinks I should just "not think about it until I have to" meaning they dont want me to talk about it. I feel kinda alone and not sure what to think.

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 2/21/2011 4:25 PM (GMT -6)   
I don't have experience with MCTD, but I sure know about the waiting game.... my symptoms began in 2007 and no diagnosis yet for me. I have 3 out of the 4 necessary criteria to diagnose lupus, but my rheumy doesn't want to go there yet. I'm seeing another specialist in another state in a few months. Part of the reason for my waiting game is that all my labs have always been normal, despite very clearly autoimmune symptoms. My rheumy has said that I am sero-negative for whatever it is that I have.
I'm almost 3/4 of the way through nursing school right now, and being sick is definitely making it much harder than it would be otherwise... I have had to miss clinical and leave early because of pain, fatigue, fever, and malaise. I sometimes worry about my ability to work as an RN after I graduate, but I just keep plugging on and hope that I will find relief from symptoms soon. I keep trying new drugs hoping that one will help.

Kathryn

Calle
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/21/2011 5:31 PM (GMT -6)   
I am 42, I have been ill for 6 months, rheumatologist has diagnosed "Lupus-like undifferentiated connective tissue disease" I have positive ANA btw. Plaquenil saved me, the pain before was unbearable. I t has been around for years and years and according to him is the most benign of the treatments on offer. It can take 6 weeks to start working though. I had a bout of this when I was 32, but it went away and hasn't bothered me till now. I can see areal improvement on the Plaquenil, will probably stay on it long term to keep it under control.

Carla Ulbrich
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 2/21/2011 5:59 PM (GMT -6)   
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

the gasser
New Member


Date Joined Feb 2011
Total Posts : 9
   Posted 2/21/2011 9:32 PM (GMT -6)   
Thank u so much to those that replied. I guess I'm kinda in limbo right now. As my rheumy said , you are in the grey we have to watch and see if you progress over into the black or stay in the grey! I'm still not sure if I have anything to treat yet just some nonspecific symptoms and borderline labs. I just feel like I'm waiting for the other shoe to drop at any second. Thanks again for listening
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