Daily Archives: Sunday, November 18, 2007
For a while I thought I had SLE (Systemic Lupus) and it scared me, but I was determined to find out for sure. I knew it was hard to diagnose. I knew that some cases took years to determine. I knew it would not be an easy road to travel. I wanted to proceed anyway.
A majority of my symptoms led me to SLE web pages all over the Internet. I was fairly educated about the disease. I have an aunt who has had it for years. I read stories of folks fighting to get the right diagnosis. I read stories of remissions. I read stories of people just like me whom are looking for a diagnosis of some kind. The people looking for a diagnosis overwhelm the Internet, and most of them believe it to be SLE. Many of these people are diagnosed with other things and could be misdiagnosed.
Many people have found the answers they have searched for and finally receive the help they so badly need. They are now medicated and battling SLE in hopes to go into remission. Some of these people however took years to finally get the proper diagnosis and it turned out in fact to be SLE.
I had blood tests done while I was pregnant with my youngest. She is only five months old so it wasn’t that long ago. There was nothing that shown up as SLE in the blood work. I was happy, but worried that I still had SLE because of all the stories I had read over the Internet. After the round of blood tests I was diagnosed with FMS (Fibromyalgia) and I wasn’t very confident in that diagnosis at the time.
As time has passed and the more I learn about FMS I realized that I probably do have a proper diagnosis. This doesn’t take away the worry about SLE however. Many people with SLE are found to have FMS too along with many other ailments and possibly other Auto Immune Diseases. I just take one day at a time and try to read as much as possible on FMS, Lupus and other illnesses in the Auto Immune family. I try to put out resources for others so that I might provide help for them. It is a tough road to travel alone.
The hair loss I suffer from is quite frightening. There is no answer to it. While I was pregnant they found that my Feritin level was desperately low and that was probably causing the hair loss. Since giving birth I have had it checked again and it is fine but my hair is still falling out. This is one symptom I do not have an answer too and I think it is SLE.
The other problems I have that are not associated with FMS are the mouth and nose sores. They come and go all year round. Some people with FMS do have problems with nasal sores I’ve read. This could possibly be an ailment of FMS but I strongly believe it also links to SLE.
I’ve asked my GP to do some further testing for SLE but she is confident she says that I have FMS and not SLE. This is also what a rheumatologist told me. I am worn down in this fight right now so I will just accept FMS diagnosis. I do believe I have FMS but I believe there is a under lying condition that hasn’t been found yet for these other symptoms.
I hope that others get properly diagnosed. I hope that if you’ve read this posting that you utilize the links I provide on the sidebar. Remember that you are not alone.