MCTD What the What? part 1

When was the first time you heard of Mixed Connective Tissue Disease?

Have you heard of Lupus?

Have you heard of RA?

Have you Heard of Diabetes? Type 1 or Type 2?

If you are like me you heard of these from commercials on TV showing the latest and greatest medications to treat these diseases.  I bet the only reason you are here is because you or a loved on or maybe a friends has Mixed Connective Tissues Disease.

Let me tell you I had never heard of let shorten the name so it take less space on the page MCTD. The first time I heard of it was when my Doctors office called asking me to come in come to his office the day after I had been sent for xray and Lab work to rule out Lupus, RA aka Rheumatoid arthritis.

Wait I am jumping a head of myself.....I had better go back to the beginning..

Maybe I should go back a little to why I was at the Doctors to begin with.  I had been in pain for about 6 or more years.  I spent days taking 12 Advil mixed with 12 Tylenol.  Yes I know that isn't good in fact Very VERY bad.  I would get steroid shots in my arms and a doctor would send me on the way saying its life or age or whatever.  I had a newborn, 2 year old a 4 year old and a 6 year old.  I was in survival mode in which case I was able to ignore everything.  Expect for my mental health and eating disorder that effected me to the point I was unable to function as mom.  Anxiety and ADHD ruled my life until 4 years ago when Shrink was able to put me on a combination of medications that brought me out of a fog and into the beautiful bright sky.

Fast forward to my youngest was finally in Kindergarten.  I found myself pushing my body to the point exhaustion every single day.  I spent my child free days training for a 5 K Spartan while cleaning the house, trying to be crafty, making meals my kids would never eat.  I found myself too tried to sleep, to tried to move.  The pain in my shoulders had returned to the point I would end up sleeping in my clothing.  It hurt to much to change and I knew if the Bra came off it wouldn't go back on unless I had help. I hated asking my husband for help.  I am a little hard headed and refuse to admit when something is wrong.  My poor husband.

A person in my church was looking for a full time baker.  She said she felt inspired to ask me even though I have very little baking skills other than the ones I taught myself or my mom tried to teach me.  I was beyond excited knowing I could financial contrite to my family.  Even though mentally I was positive I could do it my body was sending strange flares.  My hand shaking trying to push the button on the mixer.  My hand shaking when I would hand mix dough.  I figured it was just me being nervous or not used to how much strength it took even though I had been lifting weights.
I was excited to go into work but noticed the tips of my fingers were a little numb.  I shoved just back with a pinch never I just need to massage.  Another day I woke up to three fingers swollen and tinging sensation.  They old me to rest for the weekend and ice and heat my hand.  I talked to a friend with carpal tunnel syndrome.  I used her hand bracers and found the the swelling had gone down and my wrist hurt less but the tips of my fingers were still numb and it was starting to drive me crazy.
Three weeks had passed and the bakery wanted me to wait until the numbing had gone away.  I was talking to my friend when she grabbed my hand looking at them shaking, pale and icy cold.
"Heidi this isn't carpal this is something else you need to see a Doctor."
  Something in her voice woke me up.  I called the doctors office the next day.  They had me in on Tuesday.  I explain everything that had been going on from the numb cold toes to my hands.  After I finished he asked if there was anything else.  I explained the shoulder to him again along with the fact no matter how many times i tried to crack my back it always still felt pressure or the nee to be popped.
He started to touch my feet, knees, wrist, ankles and stopped with my neck when it made a grinding noise.
"That isn't suppose to sound like that Heidi. in fact you just turned 40 you shouldn't be making any of these sounds. Lets rule some things out." I left with blood lab work order and Xray.  I went off to get them done that day since the kids were all in school.  After paying a forgotten medical bill I was able to get everything done.  I sat back in my car and thought "What a waste of money.  Everything will come back normal. The labs were to check my  D levels, rule out Lupus and RA.

Thursday morning I got a call from the office asking me to come and in go over my results.  It was my husbands day off and I asked him to come.  In the back of my head I kept thinking how silly it is to have us come in to talk about nothing is wrong with me but OK! (Yea I know I know but was in denial land BIG TIME!)
Sitting down in the exam room the doctors normal smily guy was gone.  I didn't notice because I was thinking he had a bad day.
"Well Heidi I have good needs and more questions.  Good new or Bad new."
I said give me the bad so I can enjoy the good new."
We all laughed. "Let start with the lab work since I have that and waiting on the Xrays, You D levels are perfect. You do not have RA. However you have positive for ANA and RNP which suggest you have Lupus. It could be nothing more than false positive but I was you to see a Rheumatologist because this is out of my area." Trying hard not to cry the nurse comes in with my Xray results. "Goods new you do not have RA take joy in that.  Its says you have Moderate arthritis. in your C5,6 and 7 long with you L5 and S1.  some area of bone spurs but because of the lab work I am going to send you to a Rheumatologist. now the good new your right hand is just find, the Vitman D levels are perfect and you caught it early which means you can get treatment now. Any questions."


I didn't have any questions because I was still trying to process the words and paper work in my hand. The paper work said that due to the ANA and RNP positive it showed I had mixed connective tissue Disease. What in the heck is Mixed Connective Tissue disease. 

Questions? I had so many I couldn't stop thinking. We left the office and my husband said nothing is absolute until we see the rheumatologist until than you only have old lady arthritis. I love my old lady.
We laughed.  We cried together that day and I did what I do best Researched the crap out of everything on the paper

What is a rheumatologist and what do they do?  I really didn't even know anything about what was about to happen.  For those wondering too here is what those doctors do.

"A rheumatologist is an internist or pediatrician who received further training in the diagnosis (detection) and treatment of musculoskeletal disease and systemic autoimmune conditions commonly referred to as rheumatic diseases. These diseases can affect the joints, muscles, and bones causing pain, swelling, stiffness, and deformity.

Autoimmune conditions occur when the immune system sends inflammation to areas of the body when it is not needed causing damage/symptoms. These diseases can also affect the eyes, skin, nervous system, and internal organs. Rheumatologists treat joint disease similar to orthopedists but do not perform surgeries. Common diseases treated by rheumatologists include osteoarthritis, gout, rheumatoid arthritis, chronic back pain, tendinitis, and lupus.

Many rheumatologists also conduct research to find a cause of and better treatment of a rheumatic disease."

Ok I still do not get it maybe another picture?

The second I type in MCTD I almost laughed out loud.  "Rare Disease."  I always wanted to stand out in a crowd bu having a Rare Disease Nope that wasn't in my plans for life.  I figured it was a False positive and the Rheumatologist would rule it out and send me home.
After alot a fighting with insurance and finding on of two Doctors in the area that took it I was set of May 31.  I knew it had to be a false positive.

What the WHAT? This what I get for Researching 

Ok I think I get it??? NOPE totally Lost