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Old 10-20-2010, 01:09 PM   #1
Newbie
(female)
 
Join Date: Oct 2010
Location: bellingham wa
Posts: 2
Leah13 HB User
new, scared and need support...

I decided to start talking about my decease, i made a blog so its easier for me to update.
i dont have allot of information or education on what i have because the dr.s know very little, so i have Google!!

im in need of support...

< edited >

Last edited by hb-mod; 10-20-2010 at 01:58 PM. Reason: Please don't post unapproved websites, per Posting Policy. Thanks.

 
The following user gives a hug of support to Leah13:
anewdirection (12-29-2010)
Old 10-20-2010, 01:28 PM   #2
Newbie
(female)
 
Join Date: Oct 2010
Location: bellingham wa
Posts: 2
Leah13 HB User
Re: new, scared and need support...

I guess i cant share my blog
if i copy and paste all whats in my blog it will be long....




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.
UGGGGGGGGGG..........
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.

 
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Old 10-26-2010, 08:46 PM   #3
Member
(male)
 
Join Date: May 2008
Location: Langley BC Canada
Posts: 99
duncan1 HB User
Re: new, scared and need support...

Have you ever had a tick bite?

In 2007, according to a province wide BC CDC survey of BC doctors, 148 BC doctors diagnosed 221 cases of Lyme Disease, and most of these cases were probably diagnosed in the Lower Mainland which, as far as ticks are concerned, includes northern Washington state. The BC CDC states that only 13 cases of Lyme Disease were "officially" diagnosed in 2007 but it is obvious that the true number of cases is far higher. Washington state, OTOH, does almost nothing to gather or disseminate Lyme Disease statistics.

I developed Gottron's papules in the summer of 1991 and the other symptoms of dermatomyositis subsequent to a having a tick removed by my GP in May of 1990, in Mission BC. I had a target rash around the tick bite site and also the usual onset symptoms of joint pain, a flu like illness and fatigue. I also had two blood tests which were reactive for LD, but which were reported as negative. To make a long story short, 15 years later I obtained my Mission GP's 1990 notes and records, showed them to a several doctors in 2005, and was immediately diagnosed with LD, was treated with various antibiotics including two months of IV cephtriaxone. I am now managing the symptoms with 100mg of minocycline daily, along with ibuprofen, and a few other things. My joint pain is better but I still have problems with severe fatigue, headaches, and depression.

Last edited by duncan1; 10-26-2010 at 09:07 PM.

 
Old 12-29-2010, 08:14 PM   #4
Newbie
(female)
 
Join Date: Dec 2010
Location: Helena, Arkansas, United States of America
Posts: 1
anewdirection HB User
Re: new, scared and need support...

Quote:
Originally Posted by Leah13 View Post
I guess i cant share my blog
if i copy and paste all whats in my blog it will be long....




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.
UGGGGGGGGGG..........
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.


Your situation sounds very similar to the happenings that involved me. Very similar actions occurred with me, and my reactions were very similar. I had gone to my general doctor, an allergist, and a dermatologist; blood work was done by the general docotor and the allergist with a release to the dermatologist. However, it was not until I went to the emergency room of the a hospital in central Arkansas that I was diagnosed by a dermatologist with an autoimmune disease called dermatomyositis. Not much is known about this sickness, so again I am with you and googling up information.
I would like to be a supportive educational link for you and would like for you to be my supportive educational link as well.

Last edited by anewdirection; 12-29-2010 at 08:17 PM.

 
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