Welcome Pinksage !!!

pinksage said...
Hi all,

I want to say that I fully understand what it is like to be in limbo big time. I have had Lupus symptoms nearly all of my life, but I did not get diagnosed until I was 36 and it nearly killed me. It took the Lupus to attack my heart muscle before I could get anyone to even listen to me and then it was almost to late as I went into a severe heart arythmia that could have killed me instantly. I think doctors need to listen to people more closely. I literally spent thousands of dollars going to doctor after doctor for at least 16 years to continuously be told that I was worrying needlessly. It was really bad. They would act like I was a hypochondriac or med shopping. I had to develope a serious backbone. I finally got to the point where I would tell the doctor right out that if he did not want to listen to me or do any test for Lupus that I would leave right then and there and he would not get paid and I was deadly serious. The doctor listened to me very attentively then and ordered all the tests he could think of for Lupus and had me where a heart monitor for 24 hours. All of the tests came back pos for Lupus and neg for Thyroid. I was immediately sent to the Rheumatologist who told me that I have the most classic case of Systemic Lupus that he had seen in years. I have had at least 10 of the criteria needed to get diagnosed with Lupus at different times during my life. The Rheumatologist said that he believes that the Lupus started showing itself in me at the age of 5 years old. So no it is not funny when the dx gets changed or a person gets ignored. It is sad indeed.



k

Welcome Pinksage. What an awful experience you had for so long. IT's a terrible feeling when you feel like docs are brushing you off and don't take your symptoms seriously. How terrible that things had to get so serious before you were able to get help. I'm glad you found our forum - I think your experience and knowledge could help a lot of people here. It's nice to be able to come to a place where we can all relate to each other and try to help each other through the rough times. Take care and I look forward to hearing more from you.

Hi all,

I have really had a go around big time and for the most part it was uncalled for.  I will always believe that Lupus is inherrited.  I have a younger sister with it and I had an aunt that passed due to Lupus heart disease.  I think it is a terrible illness to have and hopefully someday they will be able to cure it along with all the other illnesses that are devastating.  I hope to post a lot in here.

I am sorry to hear that you are having problems with your Rheumatologist Ginny.  I also have Ankylosing Spngilitis of the spine with degenerative disc disease and osteo-arthritis of the spine as well.  I had to have surgery to replace a disc and to fuse 2 vertebra together and have a clip put in to keep the nerve from being pinched.  I hope they can help you Ginny before it get to severe.

Well have to run now as my grandson is crying and I am babysitting today.

Hugs,
K

Hi all,

How is everyone doing?  I am just coming off from a severe cold that locked itself in my vocal chords and nose big time.  I chose not to go to the doctor, because he would put me on antibiotics and Prednisone like he did the last time.  I am glad that I have a doctor that listens to me and he has been my doctor for over 14 years.  For the most part I have been stable until up to about 4 months ago when I ended up getting diagnosed with Pernicious Anemia and now have to take a B12 shot every month for the rest of my life.  I had to learn to give myself the shots and they are painful.  I hate shots.  I just gave myself one on Saturday and it put a bruise on my leg.  These shots have to be given IM and that sucks big time. 

Chrissy, I am glad that they finally figured out what is happening with you and that you are now on Plaquenil.  Plaquenil I think is one of the best drugs in the treatment for Lupus.  I have been on it since I got diagnosed along with Sulindac and Imuran. 

Well all I have to go now.  I will post later.

Hugs,

Kathy