So Frustrated !!!!!!!!!!

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PhoenixLady
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 10/31/2011 6:25 PM (GMT -6)   
I just received the last of my results from my rhuemy.

I am so frustrated!!!

Most of my results came back negative. I am dehydrated, low on Vitamin D, and B12. My double strand Dna test came back positve with a value of 92. My rhuemy then had me take another blood test to confirm the double strand dna test. She removed what the values would be and sent me a letter electronically telling me that my values fell in the "indeterminate" range.

For one I want to know where my values fell at exactly.

I feel like from the ending of her letter to me that she is writing the whole thing off and there is nothing left to do.
I feel like she is saying there is nothing wrong with me.

I don't care if it is a Lupus DX ...I just want some sort of DX to explain all these symptoms and fatigue.

I just feel like crying right now.

PhoenixLady

Kellysfirst
New Member


Date Joined Oct 2011
Total Posts : 10
   Posted 11/1/2011 7:26 AM (GMT -6)   
(((hugs)))
I've been testing negative for lupus for a year in my bloodwork. Not sure what your symptoms are but all of mine point to systematic lupus. I have had to be the greatest advocate in my sickness. I can't tell you how many Dr.'s have wished me luck and sent me on my way. As frustrating as it is, I just keep plugging along trying to find that right Dr.
It's taken me 18 months to get a diagnoses of lupus panniculitis. I'm scared as crap about it, but am happy to finally have a name, I think that was all I really needed.
Don't give up, keep at them. You'll find yourself a Dr. that will get it :)

PhoenixLady
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 11/1/2011 7:49 AM (GMT -6)   
Thanks so much for you care Kelly.
 
I am just feeling at my wits end with this doctor.  I do see her again in January but I feel like she has written me off.
 
I started meds about 3 weeks ago and I am starting to feel a little better with symptoms but not great.
 
The last time I talked to my rheumy in person I felt like she thought I was lying because I still feel completely fatigued.
 
I am thinking about switching to another Doctor but the only other choice that I have is in the same office.
 
I might wait until January tilll after I see my GP and see what she says.
 
PhoenixLady

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/1/2011 5:32 PM (GMT -6)   
She might be waiting to see if the medicine helps you or not and then diagnose you.
You said you're trying a new medicine and are beginning to feel better? Then maybe this is your answer?
Hang on until you see her again. See what she says in January after you've been on the medicine.
Joy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/1/2011 10:13 PM (GMT -6)   
Often auto-immune diseases can't be diagnosed until some trial-and-error testing to see what medications your symptoms respond to -- so like Joy said, she's probably checking out some reactions.

Remember that you trying to read her mind about what she might think of you...it's a very tangled web. Just ask straight-out -- what are you thinking about this, can you explain why we are trying this med, and so forth. The guessing game is a no-win proposition and a waste of time & energy. If she can't deal with a direct question...well, that's a different situation and I'd certainly look at a second opinion.

Hope the meds kick in soon!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 11/9/2011 7:32 PM (GMT -6)   
Honey I feel so badly for you I wish I could give you a big ole hug. I have been treated so crappy you wouldn't even believe it. I had a surgery in June that was to be really simple and it went way way different and with all the complications I almost died. A lot of it was due to doctors not listening. Anyway I have always had auto immune problems so I wasn't getting better and for some reason this seemed to make the doctors mad at me and I mean like irritated treat me like crap mad. I had some odd mouth fatigue pain symptoms going on and I had heard of Sjorgens so I asked for an ANA test....my darn dr roller her daggone eyes at me but she did it. It came back positive 1:320. She was a little shocked at that point because 4 mths into then I had lost 1/2 my hair I was getting sicker and had more symptoms, I used to work for my PCP and I know her she thinks everyone should work and it makes her mad when people dont and I know she was just ticked off. Anyway she knew she needed to get me to a rheumy immed. Now all the other tests he did came back negative for Lupus and autoimmune hepatitis but he said it is Lupus because ANA is so high and symptoms are 100% positive. Also I have a new internist/cardiologist and he said with all other tests and symptoms that are extensive it is Lupus and stop questioning it. It isn't all bloodwork! Be your own advocate! Don't be walked on they are not God despite their own designation for themselves and how THEY think you should feel let them no for certain how YOU DO FEEL despite how they think about it or not let them know the reality of the situation. Once again I apologize for what I NO you are going through it is a horrible feeling!

TracyKim
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/3/2012 8:16 AM (GMT -6)   
I am currently in the same situation.  I have been having almost "all" of the symptoms for years.  Just had a postitive ANA 1:160.  Did not even really know about Lupus until I started researching.  Went to Lupus.org and took the test.  Had every sypmtom but 2 and one was family history.  I don't know my family history.  So my Dr. ordered a Double DNA strand and a B12 strand before he will even talk to me.  He doesn't feel that the ANA was positive enough.  If these test are negative (I find out Monday) then I feel he is going to blow me off.  I have been living with the pain and symptoms for 3 years.  I keep being told arthritis or over worked or just ignored.  Why do doctors not believe their patients?  I currently work, but it has been a real struggle.  I have 4 kids, work and I am having serious issues.  I just want to know what is wrong!  I am sooo frustrated also!!  Thank you for posting. It makes me feel better to know others are having the same issues.  I sometimes begin to feel like I am crazy.

luk4dgudnit
Regular Member


Date Joined Sep 2011
Total Posts : 26
   Posted 2/6/2012 3:17 PM (GMT -6)   
It sound like we all have the same physician. My physician is an Indian descent who speak very little english and has her assistant to do all of the writing for her. I have been in constant pain on a daily basis. Pain brings me to tears most times. I have taken Predisone and a non steroid and neither helps completely. Every joint in my body hurts constantly, even more so when pressure is applied to the ankle. My hands hurt and have even turned bluish color from time to time. My eyes burn profusely and are runny (looks as if I'm crying). I am super frustrated as well. I'm tender to the touch. I know I'm not crazy but ther rheumy make me feel like its all in my mind. The quack gave me an anitdepressant. I'm not depressed. I'm frustrated as hell that the physicians are treating me like this pain is mental. My past history consists of eight car accidents, twelve surgeries from open-heart, breast lumpectomy to colonoscopy. All of which I believe has something to do with the Lupus.

I was diagnosed as having Lupus by my pain management physician after she sent me to the Lab to have blood work. The Rheumy is the quack I'm referring to. TRIAL AND ERROR MY @#$$ (lol). I'm in pain and nothing is helping not even the physicians that are draining my insurance company. Is there anyone in the boat with me?
luv4myself&people

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/6/2012 6:13 PM (GMT -6)   
I'd try to get with a different rheumy. One who will discuss things with you and listen truly to you.
Maybe you can get your pain management doctor to refer you to a different Rheumy.
Joy
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