Welcome Pinksage !!!

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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/21/2008 7:26 PM (GMT -7)   
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

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/21/2008 7:28 PM (GMT -7)   
Welcome to the forum Pinksage!!

I found this post in another topic and thought we should all say hello.

I'm glad you found us! It sounds like you've had quite a go-round! You've found a great place for support!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/21/2008 8:10 PM (GMT -7)   
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.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/21/2008 8:23 PM (GMT -7)   
Hello Pinksage,
 
Thank you for posting your message. I think it rings true to just about everyone here.  I started having health problems when I was in my early teens.  It took until I was 26 to get my diagnosis. I've also had a couple of near death experiences because of a lack of doctor's attention.  It is very sad.  I cry about it often.  It's so good to know that we're not alone. We have each other to talk to.  On the flip side of that, I wouldn't wish this disease upon anyone - so I wish there wasn't anybody who had to live the way I do. 
 
you are absolutely right.  You must have a backbone and be very knowledgeable when talking to doctors.  I have to do that with my rheumy next month.  She won't pursue a diagnosis of Ankylosing Spondylitis, but I have every single red flag of the disease, except that dang positive antibody.  I have to get tough with her. 
 
I'm glad you're here.  Looking forward to getting to know you better,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


pinksage
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/22/2008 7:43 AM (GMT -7)   

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


Live each and everyday as though it were your last and do the best you can to help yourself and others.
 
SLE (Lupus), Sjogrens Syndrome, Celiacs Spru, and Megaloblastic Anemia.


chrissy
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 8/3/2008 5:32 PM (GMT -7)   
HI. Everyone. I'm new here and just read the post from pinksage. I have been having symptoms since I was 7 when I had my first seizure in school. They said it was a seizure disorder and gave me meds. I can remember in high school the dr. said I had juvie RA.    Shortl after I got out of school I was havivg severe pain  and knobody knew where it came from.A Dr. suggested I get a kidney biopsy {NIH}which was neg for Lupus. That was 1988. I was told I didn't have Lupus, but I would very likely get Lupus. In 1995 after many tests I wa finally told I had Lupus. Afer the third rhummy I found one who listens to  me. I will be 55 next month. You must find a Dr. you are confortable with. yeah                         uni-corn                                                                             I have Raynauds,kidney involvement and I take Plaqunil and dilantin for seizures.

pinksage
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 8/4/2008 5:19 AM (GMT -7)   
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
Live each and everyday as though it were your last and do the best you can to help yourself and others.
 
SLE (Lupus), Sjogrens Syndrome, Celiacs Spru, and Megaloblastic Anemia, Akylosing Spongilitis, Degenerative Disc Disease, and Osteo-Arthritis.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/4/2008 8:37 AM (GMT -7)   
Welcome Pinksage and Chrissy! I'm glad you found this awesome forum! God Bless You, Judy
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