Tuesday, October 19, 2010

My Journey with Myositis

(please help me find a cure for myositis)

all donations will go to the Myositis foundation

It started March 2010. to the best of my knowledge I thought i was having a allergic reaction and i would pop benedryl. I noticed a rash coming out on my chest it was very itchy and thought i ate something I was allergic too.
The benedryl didn't help so i thought maybe the sun was making me have this rash on my chest.
my face was also getting rosy. so i avoided the sun. withen weeks my upper arms were getting rashy . dry itchy red rash. then middle of my back and neck area started to get red. within a month my nail cuticles looked all red and infected and started peeling back. it hurt to do normal things like put on pants.

one morning i wake up and my scalp feels like its on fire and itches terribly. I couldn't handle it anymore and made a Dr. appointment. i also started to feel very weak in the muscles , it felt heavy and achy and i was extremely tired

the dr. was baffled and asked a series of questions, 1 question was, do you do drugs..... i said, NO!
I felt like i was being categorized. I know she had to ask.
then she ordered blood tests. The blood tests came back with nothing, since she had no clue what to order or look for.

weeks later i made another doctors appointment. the rash and itchiness and fire like feeling was getting worse.
my dr. gave me a topical steroid cream. needless to say it did nothing.

i make a 3rd dr. appointment and was given a stronger steroid topical cream. I was told to use it for a week.
so I did and still didnt help.

I made a 4th appointment and was refereed to a dermatologist. That day i had 2 skin biopsies done, (stitches and all) Then the dermo ordered another blood test looking for any signs of lupus.

2 weeks later the dermo made me come in for another appointment. she said she wasnt able to read the skin biopsie results but she saw something slightly off and wanted to do 1 more skin biopsie.
at this time i was prescribed plaquenil 200mg twice a day.

so 3 skin biopsies where done.
the 3rd one gave the same results which were baffling the dermo, she had no clue so she sent me to a rhuematoligist. the reuemartoligist looked over me and said its not lupus i think its myositis a rare decease.

he ordered a thousand dollar blood test. needless to say the results came back and it was abnormal but still coundnt figure out what i had.

grrrrrrrrrrrrrrrrrrrrrrrrrrrr. the plaquenil took a few weeks to kick in and i felt more energy and no muscle weakness. Thank God!

the rash still present and the itchy still going on.
and the nail cuticles still hurting. My hands also have spots of red rash.

sun made it worse, warm showers made it worse and exercising made it worse.also a few days prior to my monthly cycle i get worse. Stress is also a big factor if i get to stressed i get terribly sick.

one morning i wake up and my genitals itch, i thought bummer i have a yeast infection. for 10 days i spent over 100.00 getting over counter yeast infection creams and suppositories.
None worked. so i made a dr.s appointment. i had an exam and they tested me for yeast.
I had no yeast infection. they said it must be part of the decease i have.

then the dr. finally prescribed me oral steroids  prednisone, 20mg 2 times a day. and another oral medicine for itching, that also helps you sleep at night.

it helped actually with itching and my female parts stopped bothering me. y rash was still present but looked a tad better. I was only givin 2 weeks worth.

I decided to get  another rhuematoligist. more closer to home. she ordered more blood tests. ( im sick of blood tests)  she looked at my skin and nail cuticles. she stated that it looks like myositis but wasnt sure.

she prescribed me 2 weeks worth of prednisone to see if that would help.
I have to say it helped my arms and back but the chest and hands and scalp still had the rash.

she told me to stop taking them when i had two weeks into them.
the blood test came back as an auto immune decease but she couldnt specify which one.

she then referred me to another Dermotoligist.
he looked at me and said I think you have a rare decease called myositis. He said i think its that with something esle in the mixture.
he then asked my old dermo to fax him all my blood work tests and skin biopsy results.
Now im waiting for him to contact me with what he thinks.

as of now im only taking plaquenil. I feel since the doctors dont know much about the decease that im not getting fully treated. I need help and support and education.