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.


  1. Leah, I am always curious as to how an "adult onset disease" can surface. Sometimes, it's in your genes and then WHAM; something in life or environment triggers it and sets it off.

    I know this sounds so funky but have you tried acupunture? How about a natural path? I know of an AMAZING doctor in White Rock (Canada). Would you like me to send his information to you? There is a natural path in Bellingham too...I would be happy to send you her information as well.

    Sometimes these triggers are so crazy. I hope there is a way to remove whatever "debris" that is causing this disease to get up and go.
    Best of luck Beautiful Leah!


  2. I was also going to suggest a natural path and 2 more blood tests. The Eliza Act test and a heavy metals test. If you don't have answers by then, go to the Univ hospital in Seattle.

  3. Kendra and Nicole.
    I actually did acupuncture one time before the onset started. I am a huge fan of Natural path! who do you recommend in Bellingham? I also know diet essential to my health. I just need to kick start and go back to being a vegan, (i think)

    Nicole I will definitely look into the Eliza test and heavy metal test. the heavy metal test sounds fun, hahaha! :)
    I will continue to keep my blog updated :)

  4. Your symtoms are those exactly like my wife's. She woke up one morning with what appeared to be an allergic reaction and we went to our family doctor. Shot and antihistamines were what was given. Two weeks passed and her nails began to look just like yours. We then say a dermatologist. He said it was Dermato Myositis and it was ACUTE. She needed treatment FAST cause she was very ill. Within seven weeks of being diagnosed she nearly loss her life. She got so ill that a feedign tube was put into place for eating and drinking. She is now on the road to recovery with IVIG/Sol Umedrol/Prednisone and Methotrexate. If you have not seen a rheumothologist yet find one who know auto immune disorders and Myositis (Inflammatory Deseases)They need to check your CPK blood levels that is where the proteins are broken down and cause the worst of the illness. There is no know CURE for the illness but recovery and remission are. We lived in Vancouver Canada for several years and the Medrona Medical Center has a vast number of medical specialist as well as the St Josephs Medical Facilities. William Anderson is a AWESOME Allergist in Bellingham who might be able to direct you to a SMART rheumothologist in the area. Good Luck! Keep up the fight and don't stop until you find the answers you want and the treatment you need!

  5. I was diagnosed with Dermatomyositis in 2003 and I have taken Prednisone and 2 other Meds that suppress the Immune system.

    I hope you can get started on a proper treatment plan very soon.
    There are a few Websites with Support Groups , I see you found 1 ( thats where I saw your Blog link )
    TMA is another one. The Myositis Association.
    Go to their page and click on Community , then Community Forum.

    All the best, Christine. xx

  6. My 8 yr old daughter was diagnosed on Oct 4 with Juvenile Dermatomyositis. "Fortunately" for her, she was already seeing a rheumy for Mixed Connective Tissue Disease/ Arthritis/ Scleroderma/ Raynaud's Phenomenon. Because she was on Enbrel at the time her symptoms were hidden. Enbrel is like 3rd line. Her rheumy totally blew it off and sent us away with nothing but Motrin for her- she couldn't walk!!! We switched rheumy's then. We were told that the best test is the MRI wherever you have muscle weakness. My Emily's MRI still showed inflammation after 3 days in the hospital on IV Solu-Medrol, & Toradol around the clock. They did an IVIg the day before release, & Remicade on her last day. She was sent home with 42 MGS of Prednisolone a day, Mobic, Methotrexate and then some. She went back for her 2nd Remicade & more Solu-Medrol after 2 weeks, and now three weeks after that we are heading back to the hospital Tuesday for yet another round. I would suggest when looking for a doctor, check the hospitals that they're associated with and see if it shows their specialties. Our rheumy's our JDM & JPM specialists. Can't wait to read that you found a great doc!

  7. do you know about Daily Strength forums?
    Also a general sit about myositis is http://myositis.yolasite.com/