nebie to this stie- and mixed connective tissue disease

[superloopie]

Hi everyone.  Thank goodness I have found this site!  I couldn't seem to find anyone else with the same disease.  Since I found out, I have been extremely scared.  I went to the ER because I was having trouble lifting my arms.  They ran a series of blood work and told me my TSH was at around 8 and was due to hypothyroidism.  I went to my doc and was placed on levothyroxine.  I was then taken off that drug because the scan showed a nodule and I need to have a nuclear scan- so waiting 4 more weeks to be med free before I can have that test.  I had other blood work come in since then -- all blood work is good except for antibodies SM- RNP -ANA and cholesterol -- all positive.  I only have joint pain most the time- albeit sometimes very very painful, but didn't feel sick.  Now waiting to see the doc.  I am very scared.  I lost  my mother to an abdominal aortic aneurysm last October after a 2 month stay in the MICU.  I lost my best friend in the world, and now I feel I am facing this alone.  I have 5 children ages 14-8 and am afraid I won't be there to watch them grow.  Today, I am back to being unable to life my arms, extremely sore throat and upset tummy.  Doc hasn't returned my call and I just feel flutered.  I am on prednisone 5MG daily and Hydroxychloroquine 200MG but soon to be upped to 400MG daily.  I can't get rid of my headache and sore throat and just wish I felt like I did before October.  Thanks for letting me vent. 

[lupusjoy]

:wave:HI JUST WANTED TO TELL YOU  wlcmtrioTO THE LOOP IT IS A JOY TO HAVE YOU HERE I HOPE YOU CAN
FINE SO ANSWER ABOUT YOUR SELF AN GAIN LIFE TIME FREINDS HERENON THE LOOP I AM MAD YOU HAD 5 KIDS I WOULD HAVE LOVE TO HAVE
5 BUT I COULD NOT5 EVEN HAVE ONE YOU ARE TRULY BLESSED AN I WANT YOU TO NO THAT GOD HAS GAVE YOU ALL ANGELS  AN HE WILL NOT LET YOU LEAVE THEM SO JUST STAY STRONG AN NO THAT GOD WILL HELP YOU THREW IT ALL YOU HERE ME STAY BLESSED AND NO THAT GOD LOVES YOU AN SO DO I ((TESA))) :angel:AND AGAIN 

[Adminஐﻬ]

Hi everyone.  Thank goodness I have found this site!  I couldn't seem to find anyone else with the same disease.  Since I found out, I have been extremely scared.  I went to the ER because I was having trouble lifting my arms.  They ran a series of blood work and told me my TSH was at around 8 and was due to hypothyroidism.  I went to my doc and was placed on levothyroxine.  I was then taken off that drug because the scan showed a nodule and I need to have a nuclear scan- so waiting 4 more weeks to be med free before I can have that test.  I had other blood work come in since then -- all blood work is good except for antibodies SM- RNP -ANA and cholesterol -- all positive.  I only have joint pain most the time- albeit sometimes very very painful, but didn't feel sick.  Now waiting to see the doc.  I am very scared.  I lost  my mother to an abdominal aortic aneurysm last October after a 2 month stay in the MICU.  I lost my best friend in the world, and now I feel I am facing this alone.  I have 5 children ages 14-8 and am afraid I won't be there to watch them grow.  Today, I am back to being unable to life my arms, extremely sore throat and upset tummy.  Doc hasn't returned my call and I just feel flutered.  I am on prednisone 5MG daily and Hydroxychloroquine 200MG but soon to be upped to 400MG daily.  I can't get rid of my headache and sore throat and just wish I felt like I did before October.  Thanks for letting me vent. 

Hello Super Loopier and welcome!
First all my condolences to you regarding your Mother. I feel like I just lost mine but it's been about 5 years (next month)
Have you been to a rheumatologist yet or is that who dx you?
It sounds like by the test he/she ran is normal as well as the "waiting game" and trial and error with what meds will work for you. I know it's very disconcerting all these symptoms, but each day it can change to a total different symptom, or you feel great when you wake up then feel like crap by noon or can't get out of bed...

Try to read up more information on MCTD. Here is a link to help you understand the whackiness of it all...
http://www.lupusmctd.com/index.php?topic=1088.msg5561#msg5561

[superloopie]

Thanks for your replies.  My rheumy is who diagnosed.  I am scared and am trying to get through this.  I went to see the doc today to see if I needed to go up on my prednisone until the hydroxychloroquine is in my system, but thank goodness I don't.  I wish I were as brave as you all.  How do you know if you need to see the doc or go to to the ER?  How do you know when to just stay in bed and try to heal?  I didn't think to ask these quetions when I was in there as all I was hearing at the time is that so far I look pretty good and my labs and swelling are better.  Thanks so much for your replies!!!

[Adminஐﻬ]

Thanks for your replies.  My rheumy is who diagnosed.  I am scared and am trying to get through this.  I went to see the doc today to see if I needed to go up on my prednisone until the hydroxychloroquine is in my system, but thank goodness I don't.  I wish I were as brave as you all.  How do you know if you need to see the doc or go to to the ER?  How do you know when to just stay in bed and try to heal?  I didn't think to ask these quetions when I was in there as all I was hearing at the time is that so far I look pretty good and my labs and swelling are better.  Thanks so much for your replies!!!

Hello Super Loopie,
I can't tell you when you should or hsouldn't go to the ER or call the Dr. I can tell you what I have done or still do.
If I'm having a bad day (not feeling well, aching, etc) I do what my body is telling me. REST!
If I am having SEVERE pain, migraines or pains that will not respond to normal meds for that ailment, then I get on the phone and call or head over to ER.
Other than that, I wake up each day, do what I can.
I have set limits, I am not the "Super Mom" I used to be (even tho my kid is 30 ).. but I do not knock myself out to please anyone anymore. If my home isn't tidy and guests come by, well then they can accept it I am having a bad day.
I used to be a neat freak but as I got older I realized I can't keep pushing myself to have the perfection I had before. There is no way.

Listen to your body, stay out of the sun, drinks lots of liquid in the heat. (I'm in a major heat wave right now I'm advising anyone this summer drink water, lots of it! Besides it's good for your kidneys!)
Just take it easy, do not stress over the small stuff!
Life's a gift, unwrap it and ENJOY!
Things will be OK... if not call the Doc....OK?
Glad you are here!
Kathy