Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Just for Fun > Community Board
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread Display Modes
Old 05-24-2013, 02:55 PM   #16
disfan07
DIS Veteran
 
disfan07's Avatar
 
Join Date: Mar 2006
Posts: 3,452

[QUOTE=Feralpeg;48490103]DD has chronic joint pain. She also has endometriosis, IBS, irregular heartbeats, low-grade fever, urological inflammation and an unexplained rash. She also has some indication of Raynard's disease. Her finger and toenails turn blue on a regular basis. She has seen an endocrinologist, cardiologist, urologist and rheumatologist.

Her ANA is higher than normal, but not off the scale. So far, they are all saying she has some type of auto immune problem, but not definitive enough to call it Lupus. They are currently calling it fibromyalgia and watching her closely.

She underwent a number of allergy tests and tried eliminating gluten and other products from her diet with no improvement of her symptoms.

It is very frustrating to not be able to put an exact label on her issues. However, even if they do come up with a better diagnosis, there is no magic bullet cure. They just have to treat the symptoms.

OP, have her ask the doctor about her ANA level. If it is repeatedly over 180, it could be an indication of
__________________
All Star Sports (2007, 2008); All Star Music (2001); Caribbean Beach (1992, 1994, 1996, 1997, 1999); Coronado Springs (2004); Port Orleans French Quarter (2007); Port Orleans Riverside (2014); Wilderness Lodge (2006); Pop Century (2010, 2012); Saratoga Springs (2013); The Contemporary (2013); Grand Floridian (2014)

Last edited by disfan07; 05-27-2013 at 01:21 PM.
disfan07 is offline   Reply With Quote
Old 05-24-2013, 04:06 PM   #17
seven dwarfs
DIS Veteran
 
seven dwarfs's Avatar
 
Join Date: Jul 2006
Location: somewhere out there
Posts: 1,046

Lymes with co infections. She needs to go to a lyme literate dr. Do research on lyme. (ILADS-good place to start) I have two children that have almost died. One has a positive ana and many issues you have mentioned and is only 10! Blood test are not always accurate. Good luck to you both!
__________________
seven dwarfs is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 05-24-2013, 05:10 PM   #18
luvwinnie
And how are YOU feeling?
My happy thought: Sitting on Main Street eating ice cream.
Can't tell the difference between Burger King and Wendys
 
Join Date: Sep 2000
Location: Bergen County, NJ
Posts: 10,106

Seeing ONE rheum may not be enough. I had to see three before finding someone who actually helped me. My initial dx was undifferentiated connective tissue disease. Then I went on to develop psoriasis and psoriatic arthritis. At first prednisone helped me immediately. Since she is on LI, I'll suggest my dr if she is interested. Dr Gary Solomon at NYU. Love him I wish her luck. I know how frustrating it is.
luvwinnie is offline   Reply With Quote
Old 05-24-2013, 07:42 PM   #19
LiveYourLife
I am the one who knocks...
 
Join Date: Aug 2012
Location: On a plane to Vegas
Posts: 1,019

Jennasis, this is going to be a strange question but what is your Sister's stress level at? Not specifically related to her health issues, but is she, in general, a tightly wound person?
__________________
Have an A-1 Day!
LiveYourLife is offline   Reply With Quote
Old 05-24-2013, 08:08 PM   #20
WDWBarb
It was, in fact, *I* who was sounding like a loose fan belt
I need to put some distance between my coffee, my mouth and my monitor
 
WDWBarb's Avatar
 
Join Date: Mar 2007
Posts: 3,878

My DD's illness started with joint pain. It then moved to extreme fatigue, hair loss, headaches and dizziness. Her ANA would alternate between a + & -. Very low Vit D. All bloodwork came back normal. She got sicker and sicker until a very good doctor finally tested for and diagnosed Hashimoto's. It's an autoimmune disease that attacks the thyroid. Many doctors missed it because her thyroid levels were normal, but that's not uncommon.

There is a reason and it needs to be accurately diagnosed. She needs to keep pushing until they know. My DD is almost all better now thanks to one small pill per day. I just wish they hadn't dismissed her joint pain when she had it because it could have prevented her from suffering so long.
WDWBarb is offline   Reply With Quote
Old 05-24-2013, 08:12 PM   #21
ashmarie06
DIS Veteran
 
ashmarie06's Avatar
 
Join Date: Jan 2012
Location: Cincinnati, OH
Posts: 535

Quote:
Originally Posted by WDWBarb
My DD's illness started with joint pain. It then moved to extreme fatigue, hair loss, headaches and dizziness. Her ANA would alternate between a + & -. Very low Vit D. All bloodwork came back normal. She got sicker and sicker until a very good doctor finally tested for and diagnosed Hashimoto's. It's an autoimmune disease that attacks the thyroid. Many doctors missed it because her thyroid levels were normal, but that's not uncommon.

There is a reason and it needs to be accurately diagnosed. She needs to keep pushing until they know. My DD is almost all better now thanks to one small pill per day. I just wish they hadn't dismissed her joint pain when she had it because it could have prevented her from suffering so long.
I had many of the same symptoms including the fluctuating Ana rates. It took 3 years of pain, but I was finally diagnosed with Lupus and RA. Nobody ever wants to get diagnosed with that, but it was almost a relief to finally get treatment.
__________________
Ashley
ashmarie06 is offline   Reply With Quote
Old 05-24-2013, 08:16 PM   #22
crz4mm2
Most of the time I just sit and scratch my head...
 
Join Date: Dec 2003
Posts: 9,528

Quote:
Originally Posted by Jennasis View Post
I'm just casting a broad net here. My sister has been experiencing chronic, daily, excruciating pain in pretty much all of her joints. She's young (just turned 30) and in good health otherwise. It's been many months now and she is really suffering. She's been to a lot of doctors (GP, Neurologist, Endocrinologist, Rheumatologist etc) and undergone a lot of tests, but so far they've turned up nothing. She's been tested for Lyme's, MS, and a bunch of others that escape me at the moment. Has anyone else experienced anything like this?? I feel so helpless for her. She's got another round of doctor's appointments today...more tests. She's hoping they'll order an MRI. She's worried she's going to wind up with the DX of Fibromyalgia...the catchall.

The only other thing I was able to suggest to her was seeing an Allergist and that maybe she was allergic to something (wheat? gluten??).
I had severe joint pain too. I went Gluten free in Nov of last year. While I still have some joint pain, I would say it is 90% better. I rarely use Ibuprofen now (used to take it at least once if not 2 times a day before).
I have also not had a migraine since, and acid reflux is GONE.
It's worth a shot if you ask me.
__________________


crz4mm2 is offline   Reply With Quote
Old 05-24-2013, 08:18 PM   #23
WDWBarb
It was, in fact, *I* who was sounding like a loose fan belt
I need to put some distance between my coffee, my mouth and my monitor
 
WDWBarb's Avatar
 
Join Date: Mar 2007
Posts: 3,878

Quote:
Originally Posted by ashmarie06 View Post
I had many of the same symptoms including the fluctuating Ana rates. It took 3 years of pain, but I was finally diagnosed with Lupus and RA. Nobody ever wants to get diagnosed with that, but it was almost a relief to finally get treatment.
DD's Rheumatologist thinks she might eventually "evolve" into Lupus. She says that one autoimmune often leads to another like a domino effect. She keeps a close eye on her for that reason.

Autoimmune diseases are so hard to diagnose. There's a Hashimoto's antibody that they test for and that one is pretty clear-cut, but it's getting them to test for it that's not so easy.
WDWBarb is offline   Reply With Quote
Old 05-24-2013, 08:19 PM   #24
mommy2allgirls
Stay out of the damn lakes!
 
mommy2allgirls's Avatar
 
Join Date: Jan 2008
Location: Texas
Posts: 1,300

I sent you a pm but since she lives in an area where lyme is prominent im guessing she has lyme and some co infections. I know you said she's been tested but the tests are highly inaccurate. The best test is through a place called Igenex and I recommend she sees a lyme literate doc and its also part clinical. I have been dealing with lyme for years and an now on an IV for 10 hours a day trying to reverse symptoms.

I blog about it and FYI most docs won't agree with lyme and don't believe it can cause what it does.

Crazylyme.com is my blog also have her watch the documentary Under Our Skin it's free on Hulu and streaming on Netflix see if her symptoms match

Sent from my iPhone using DISBoards
__________________
Casey
Wife to my Prince Charming, Mommy to 5 Princesses, Disney obsessed, & late stage lyme, babesia, and bartonella fighter
Family Blog
Lyme Blog
mommy2allgirls is offline   Reply With Quote
Old 05-24-2013, 08:58 PM   #25
Feralpeg
Diet coke lover
Can now visit the parks anytime
My DD, the movie star
Sean Bean...is he related to Mr. Bean?
 
Feralpeg's Avatar
 
Join Date: Dec 2000
Location: Windermere, FL
Posts: 18,197

Quote:
Originally Posted by WDWBarb View Post
DD's Rheumatologist thinks she might eventually "evolve" into Lupus. She says that one autoimmune often leads to another like a domino effect. She keeps a close eye on her for that reason.

Autoimmune diseases are so hard to diagnose. There's a Hashimoto's antibody that they test for and that one is pretty clear-cut, but it's getting them to test for it that's not so easy.
That is exactly what DD's rheumatologist thinks. He is seeing her every six weeks for follow blood tests. In a way, it would be a blessing to hear that it is Lupus so we would know for sure.
Feralpeg is offline   Reply With Quote
Old 05-24-2013, 09:03 PM   #26
Jennasis
It's a miracle! I stayed awake during the El Rio Del Tiempo ride!
Let's not even TOUCH the whole Dog vs. dawg vs. Dowg thing!
PLINKO baby!
 
Jennasis's Avatar
 
Join Date: Jun 2000
Location: The Triad, NC
Posts: 24,231

Thanks guys! You've all been super helpful. Lots of things I certainly would never have thought...which is why I figured asking here would be helpful. Someone asked about her stress level and I think she tends to be high strung on a good day. I tried to delicately suggest that she consider stress as a potential factor. I know I myself have a lot of anxiety, particularly surrounding my own health, which tends to manifest itself in very physical ways (headaches, GI issues etc). I stop short of calling myself a hypochondriac.

Anyhoo, PLEASE keep all the great suggestions coming.
__________________
Jennasis is offline   Reply With Quote
Old 05-24-2013, 09:27 PM   #27
paintnolish
You'd think a sniff in the general vicinity would be sufficient
I mean, how much more can a dead guy do?!?
I'm meh about "meh."
 
paintnolish's Avatar
 
Join Date: May 2006
Location: IL
Posts: 5,808

I know stress can make it worse, but it kind of makes me angry/sad, too, because it makes me feel like it's all in my head. My dr. wanted me to take Cymbalta, an antidepressant, because she said it helps with chronic pain. Am I stressed? Heck, yes! I'm stressed because I've mentally diagnosed myself with about a zillion terminal illnesses because I'm in pain all the time and nobody knows why!
FYI, my rf was 74 and my ana was 160.
__________________
The Latest and Greatest TR: The Family Truckster Heads to Wally World, 6/19-7/1/13
http://www.disboards.com/showthread.php?t=3129993
Quality over quantity: Unfished TR: Pop, Abraham Lincoln, and Talking to Strangers
http://www.disboards.com/showthread....7#post34722197
DH Me DS (13) DD (12) Baby DS (1)
paintnolish is offline   Reply With Quote
Old 05-24-2013, 09:50 PM   #28
disfan07
DIS Veteran
 
disfan07's Avatar
 
Join Date: Mar 2006
Posts: 3,452

Quote:
Originally Posted by paintnolish View Post
I know stress can make it worse, but it kind of makes me angry/sad, too, because it makes me feel like it's all in my head. My dr. wanted me to take Cymbalta, an antidepressant, because she said it helps with chronic pain. Am I stressed? Heck, yes! I'm stressed because I've mentally diagnosed myself with about a zillion terminal illnesses because I'm in pain all the time and nobody knows why!
FYI, my rf was 74 and my ana was 160.
I'm confused....why were you upset that she wanted you to take cymbalta? Yes it's an antidepressant but it has many other uses as well and chronic pain is one of them. I was prescribed cymbalta at one as well for chronic pain. It didn't work but I never even thought to take offense that it was an antidepressant.
Lexapro is often prescribed for IBS related abdominal symptoms and it's an antidepressant as well.

Antidepressants and anti anxiety meds have a lot of other uses (both on label and off label) that have nothing to do with mental illness.

I just wouldn't refuse a medication that could help because it's an antidepressant.
__________________
All Star Sports (2007, 2008); All Star Music (2001); Caribbean Beach (1992, 1994, 1996, 1997, 1999); Coronado Springs (2004); Port Orleans French Quarter (2007); Port Orleans Riverside (2014); Wilderness Lodge (2006); Pop Century (2010, 2012); Saratoga Springs (2013); The Contemporary (2013); Grand Floridian (2014)
disfan07 is offline   Reply With Quote
Old 05-24-2013, 09:57 PM   #29
LiveYourLife
I am the one who knocks...
 
Join Date: Aug 2012
Location: On a plane to Vegas
Posts: 1,019

Quote:
Originally Posted by Jennasis View Post
Thanks guys! You've all been super helpful. Lots of things I certainly would never have thought...which is why I figured asking here would be helpful. Someone asked about her stress level and I think she tends to be high strung on a good day. I tried to delicately suggest that she consider stress as a potential factor. I know I myself have a lot of anxiety, particularly surrounding my own health, which tends to manifest itself in very physical ways (headaches, GI issues etc). I stop short of calling myself a hypochondriac.

Anyhoo, PLEASE keep all the great suggestions coming.
Quote:
Originally Posted by paintnolish View Post
I know stress can make it worse, but it kind of makes me angry/sad, too, because it makes me feel like it's all in my head. My dr. wanted me to take Cymbalta, an antidepressant, because she said it helps with chronic pain. Am I stressed? Heck, yes! I'm stressed because I've
mentally diagnosed myself with about a zillion terminal illnesses because I'm in pain all the time and nobody knows why!
FYI, my rf was 74 and my ana was 160.
That was me that asked about stress. I found myself in a health tizzy a few years ago. After numerous tests (many listed here), and seeing a few specialists, nothing was wrong with me. My health issues started during an extremely stressful time for me at work, I was under the most pressure I had ever been under professionally in my life. When I started getting aches and pains, it put me in even more of a tailspin. Now I was worrying about work AND my health incessantly. After 8 months, and a clean bill of health on paper, my Dr suggested I try a low dose of xanax. It worked like a charm. I am a tightly wound person, and all the stress was just building and building, and it was literally making me physically ill. It is very strange how stress can manifest in the body. I think your Sister should proceed with what her Dr suggests, however, if all paths have been taken, and everything checks out ok, it could be stress and anxiety. I hope your Sister feels better soon!

Paintnolish, I quoted you to say hang in there, I hope you feel better soon, too!
__________________
Have an A-1 Day!
LiveYourLife is offline   Reply With Quote
Old 05-24-2013, 09:58 PM   #30
paintnolish
You'd think a sniff in the general vicinity would be sufficient
I mean, how much more can a dead guy do?!?
I'm meh about "meh."
 
paintnolish's Avatar
 
Join Date: May 2006
Location: IL
Posts: 5,808

I think it's more because she wants to treat the symptoms but not find out what's causing them. I'm still breastfeeding, and I don't want to wean him so I can take something that may or may not work. I also don't want to take some medicine I have to wean myself off of.
__________________
The Latest and Greatest TR: The Family Truckster Heads to Wally World, 6/19-7/1/13
http://www.disboards.com/showthread.php?t=3129993
Quality over quantity: Unfished TR: Pop, Abraham Lincoln, and Talking to Strangers
http://www.disboards.com/showthread....7#post34722197
DH Me DS (13) DD (12) Baby DS (1)
paintnolish is offline   Reply With Quote
Reply



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 02:37 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: