New Member looking for support
Posted 04 August 2009 - 12:38 PM
I am new to the board, and have been meaning to post. I keep researching and reading every thing I can find.
Well, here is my story. I became a mother of twins in Sept 2003. I went through fertility and got buy one get one free thanks to science.
I had a hard time getting pregnant. Well, after the twins were born I kept having weird things happen, yet mostly pain in
my abdominal area. I just did not feel good, or have my usually more than most people energy.
2004 Colonscopy found Diverticulosis
2005 Gall bladder remove emergency
Platelets under 100,000 at time of surgery.
2006-2007 complained of pain, diarrhea, heart palpatations at work, and NO energy.
I thought it was my ovaries, or digestion? My gynocologist sent me to Rheumatologist.
RHEUMY #1 looked me over and said you look great, and ran an Ana panel:
TEST #1 AUG 2007: rheumatologist #1
SCL-70 - Positive 155 Normal (0-99)
Ana Positive 155 too
C-3 Complement was low at 82 Normal (90-180)
The rheumatologist #1 called me on the phone and told me I had Scleroderma and he would see me in 4 months.
Well, being a health care professional I had studied Scleroderma and knew it was not good.
I proceed to go have my own labs ran two weeks later.
TEST #2 SEPT 2007: My own test: Only ran the test that where positive on the panel.
SCL-70-Negative 49 *Normal (0-99)
ANA Negative 49 *Normal (0-99)
C-3 complement was low 84 *Normal (90-180)
TEST #3 OCT 2007: rheumatologist #1
SCL-70 Negative 22 *Normal (0-99)
ANA Negative 51 "
C-3 complement low 74 *Normal (90-180)
TEST #4 OCT 2007: rheumatologist #2
ANA-Nuclear AB Postive 1:80 speckled pattern
C3-complement low 73 *Normal (79-152)
Rheumatoid Factor hight 38 * Normal <20
Then I went to my primary doctor and told him I wanted every thing checked. My heart, lungs, ect...........
The Cardiologist found a small pericardial effusion of 30cc extra fluid.
Next I went to the Endocrinologist, and I ask her to run a Scl-70 on me.
TEST #5 APRIL 2008:
SCL-70 Positive 161
Ana Positive 161
Cortisol: 24.5 which is high *Normal (3.0-16.0)
My rheumatologist has not ran any of the scl-70 on me since last year.
TEST #6 July 2009:
C-3 complement 82 *Normal (90-180)
I still have pain in my abdominal area and my hands turn white to cold sometimes.
No Blue color. My energy has got better, but I am taking lots of vits, and DHEA.
Oh, and one half ambien when I can not sleep.
My ulnar nerve has been checked and not firing properly, but it is okay.
Sorry to be such a long post, but there is just too much.
I am scheduled to see another rheumatologist in Oct 2009 and we will see what she says. She is at Emory University and hopefully has more experience.
My current rheumatologist #2 wants to put me on Antidepressants, but I am not depressed. I just hurt and this is what upsets me.
I am a Dental Hygienist and have stop seeing patients but once a week to spend time with my twin girls.
I am staying positive and will not give up until I understand this more. Our health care only focuses on treatment of the issue, and we need prevention.
The Dental world pushes to prevent disease and I hope we will see this more in health care.
Has anyone had this same experience?
Posted 05 August 2009 - 12:57 PM
Welcome to Sclero Forums! I am very sorry to hear of all you are going through. I suppose you have read already that it takes an average of six years for women to be diagnosed with scleroderma in the U.S. It especially isn't easy in the initial stages of a slow onset when there isn't much to go on except a positive Scl-70 and Raynaud's, etc.
I may be wrong (I often am!) but it's probably pointless to go on having the Scl-70 or Complements repeated now, as you have had 2 or more positives on each. I think you've proved the point, there is something haywire there. I would like to suggest that you consider consulting a scleroderma expert. They may not be able to diagnose you yet, given a paucity of diagnosis criteria so far, but they should certainly be able to begin monitoring you. In about half the cases, initial symptoms of connective tissue disease clear up on their own, or never develop any further. You might be one of the lucky ones in that regard, but it would still be too soon to tell, obviously.
But I'd feel better if you were at least monitored by an expert since you are Scl-70 positive among other things. And however helpful rheumatologist may be with other types of arthritis, they are generally not up to speed at all on scleroderma since they may only encounter a single case in their entire career (if that).
Of course, I have no medical training at all, so you have to take what I say with a grain of salt -- or even pepper if you prefer. But please hang around here until you get these issues resolved, one way or another. Okay?
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 06 August 2009 - 05:05 PM
Like you, I tested positive for SCL-70 but was told I do not have scleroderma. My test was 233 with 99 being normal. From everything I have been told and from all the research I could come up with, the SCL-70 test is not in itself diagnostic. Also, the accuracy of the test varies with the different methods and with different labs. I have been on a roller coaster of emotions about this for more than a year now. I get upset about any joint pain and keep wondering if my skin is thickening. I am 52 and have some tiny lines above my upper lip which I think are from age, but of course I wonder if it is scleroderma. This test has made me into a hypochondriac. Please know that you are not alone.
Posted 11 August 2009 - 09:05 AM
Thank you for your opinion because it seem you're more informed than most. There was some encouraging words in your message. Boy, do I need that.
I have no signs physically that you can see with the eye. My hands seem more wrinkled, but I just think I am getting older.
However, I do have fatigue and some just pain all over sometimes more than other. I am 37 years old and very active, but have been slowed by
whatever is going on with my body. I see patients about one to two times a week, down from four just to simplify my life. I eat right, exercise, and live a
very active normal life. The twins are my biggest challenge.
In 2005 I had a colonoscopy because I was having pain and the doctor told me I had acid reflux. I had no signs of it in my mouth or
hurt in my throat. This doctors bedside manner was not nice. She did a colonoscopy and told me I had Diverticulosis.
I just had another colonoscopy on WED this past week and a different doctor took pictures of everything and said I looked Great with NO Diverticulosis.
I had ask him to take a biopsy to check for Scleroderma, but he saw nothing. I did trust this last guy.
I am just having a hard time trusting physicians.
My rheumatologist wants me to go on an antidepressant. He emails me once or twice a month to check on me.
He is very nice, but I am not sure if he knows more about the scl-70 antibodies.
I would like a referral to a good scleroderma doctor. I am located in Atlanta. Does anyone have a list or know who is the best.
I am schedule to go see my 3rd rheumatologist in Oct.
Thank you for letting me vent. I have not talked to anyone. My friends just would not understand.
Thank you, Tonya
Posted 11 August 2009 - 09:15 AM
I am just having annoying mild things happen, but nothing that anybody can see or feel but me.
I have had a 2 positive and 2 negatives. I guess you saw my first post, but I am if you look at me an athlete.
I still can play sports but not as hard as I use too. The energy is gone sometimes.
Anyway, I am sorry to be so self centered, but have been really frustrated for a long time. I am two years in to the diagnosis and have
never talked about it.
Thank you, Tonya