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meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/18/2008 11:42 AM (GMT -7)   
I have been seeing the same hematologist since I first needed blood work to find out if I had blood clotting factors because they run in my family. I didn't have the clotting factors but I tested positive for ANA. I was told it was 'no big deal' and nothing about it was explained to me. I went home and didn't think about it but a year later I developed Crohn's disease! I had no idea that it was related to the ANA and I feel like if it would have been explained to me I would have been more prepared to seek a diagnosis sooner and suffer less before seeing a gastro (assuming there was nothing wrong with me). I know I should do my own research, but why is it so hard to get doctor's to give you the whole picture? It upsets me that I need to come online and research everything on my own when they should be saying to me this is this and that is that and you should look into this further. I am going to look for a new Hem. Sometimes I just don't know where to look? I am very thankful for you all here.
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/18/2008 12:24 PM (GMT -7)   
(((((((( Meow ))))))))

There really are a lot of people walking around with +ANA and no symptoms/issues.

I think the doctor considered the panic he would induce (in you) if you knew that you could one of many autoimmune disorders. Then he may have robbed you of some very normal time.

I really like to understand the whole picture too . . . but some patients really panic and the stress can actually trigger symptoms. I hope that your chron's is being managed well. Its tough isn't it?

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


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/18/2008 12:43 PM (GMT -7)   
You're right Rosie, I just feel like I have to drag info out of my doctors sometimes!
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/18/2008 3:28 PM (GMT -7)   
Hey Meow,
 
We really understand what you're going through with this.  I have had doctors withhold information too and it only makes my situation worse when I find out that they really should have told me everything.  I agree with you.  I don't want to find out on the internet what my doctor is looking for or suspecting.  I want to hear it from them.  I can appreciate Rosie's wisdom wink  in saying that they don't want to induce any unneeded worry.  I guess there's two sides aren't there!  Maybe try to give your Hemo a chance.  It's a lot of work trying to find a new doctor.  We need to preserve our precious energy for other things.
 
I have resorted to being very upfront with my doctors.  I have told them not to hide things from me.  They respect that.  Maybe have a heart to heart with your Hemotologist and let him know you want to be in on everything, 100%. 
 
I hope this helps!
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, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


alexsal
New Member


Date Joined Sep 2008
Total Posts : 18
   Posted 9/18/2008 4:50 PM (GMT -7)   
Rosie is the guru of Lupus I have learned morre from her than I have from my doctor!!! I only found out that I had Lupus because i got ts he butterfly rash and my hair was falling out..In big patches Rosie has talked about and made me understand alittle better about Lupus. I only have one friend that has lupus and she is in and out of the hospital all the time and yes that scares me to death,,,sheh is currently down to 76 pounds and again in the hospital, so yes it does scre me to death...thanks Rosie for all you know about this Lupus it has helped me out more that you will ever know.
SYSTEMIC LUPUS,ASTHMA,DIABETES, DEPRESSION ,MIGRAINS , ANIEXTY  HEART PROBLEMS.  ALEX
 
DON'T MAKE ME APPOLIGIZE FOR WHO I AM!!!!!!!!


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/18/2008 5:04 PM (GMT -7)   
blush Your welcome alexal . . . just remember that my posts and those of the other members here are strictly our opinion . . . as none of us has a medical degree (although we did have a great lupan pharmacist with us for a while). But I'm glad that I've helped along the way. It really makes my day.

Meowse . . . Ginny is right too. Our 'relationships' with our doctors need to be carefully cultivated. We need to help them know what we want. If I have something to say, and I know it before the visit, I type it out with my symptoms and questions. Then I give the doc a copy and I hold a copy . . . it helps me have a voice, as I lose my ability to speak up for myself in the doctor's office. Sad but true. My notes have served me well. There are a few docs who don't like it . . . but that's my style and, in general, it works well for me.

I hope your next appointments go better.

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


alexsal
New Member


Date Joined Sep 2008
Total Posts : 18
   Posted 9/18/2008 6:46 PM (GMT -7)   
I do understand that it is just your opinion BUT sometimes it is alot easier to hear things from someone who knows what we are going threw then the doctor who is trying to figure out what is going on,,,,before this forum I knew little about lupus just what the doctor told me not alot out there about this,,, SO Rosie thanks alot I take all your advice to heart it does help alot  thanks alex
SYSTEMIC LUPUS,ASTHMA,DIABETES, DEPRESSION ,MIGRAINS , ANIEXTY  HEART PROBLEMS.  ALEX
 
DON'T MAKE ME APPOLIGIZE FOR WHO I AM!!!!!!!!

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