I do not understand what some of you guys go through..

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Chaya
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Date Joined Mar 2007
Total Posts : 194
   Posted 7/17/2008 5:58 PM (GMT -7)   
I have been watching repeatedly how many of you seem to suffer with your Dr.'s. I dont understand the Diagnosis process in which they decide you have a disease and then " take it away". I asked my Dr. about this today and she didnt have an answer for me either. In her practice of medicine they dont make a diagnosis unless they are pretty darn convinced with hard core serology to support a diagnosis. I had a primary who discovered the disease , a Rheumy who did the follow up testing to support the discovery and finally the referral to someone knowledgeable enough to treat me at JHU. I dont understand how you wax and wane on Lupus. Can someone explain this to me? I know the labs can fluctuate often and sometimes show disease and other not show it. Is this the culprit for why some of you get Lupus tossed off the dx? I am so sorry you guys have to suffer this emotional garbage on top of feeling so sick.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/17/2008 6:03 PM (GMT -7)   
It took me nine months to get a diagnosis. My primary doc knew exactly what was wrong with me but NONE of the blood work supported the diagnosis and I did not have one of the classic symptoms (RA-no joint inflamation normal seds normal RF). Then one day my knee looked like it had a softball inside of it and all the tests were positive-I still did not get a diagnosis until after seeing my rhuemy. I have never been undiagnosed even though I had the word atypical attached to the diagnosis as I have more symptoms outside my joints than inside my joints.
Sj

Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 7/17/2008 6:07 PM (GMT -7)   
right, I get the slow diagnosis as they want to be ever so careful . Its the un-diagnosing that perplexes me.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/17/2008 6:33 PM (GMT -7)   
I don't know why either -- I think some doctors just plain don't trust each other, and since they all seem to have horrible handwriting they all want to do everything over to fit their own diagnostic criteria...

If there is a better explanation I'd sure love to hear it!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 7/17/2008 6:40 PM (GMT -7)   
rotfl Lynn they do have awful handwriting!!!!!!!!!

closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 7/17/2008 6:41 PM (GMT -7)   
I've been wondering about this same thing...I've been reading different forums on here and I've read that this happens with crohns disease too. I just don't understand how you can have something one day and have them say it's totally gone the next? Does this happen with other autoimmune diseases, or just these two? I also don't understand how you can be tested one day and have it not show up, then have it show up another day. I know, I know...these diseases "hide". Just one of those things I don't understand. I'm still in the process of being diagnosed for whatever I may have so I have no answers...just tons of questions.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Too many meds to list!


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/17/2008 6:46 PM (GMT -7)   
I was deadly serious, it isn't a joke when they want to redo things years later because they can't read things, and meanwhile your body or the disease has changed so it look like either you are lying or you have mental issues

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/17/2008 6:59 PM (GMT -7)   
I talked to my PCP about this today. He said that medical science doesn't understand why the body attacks itself the way it does in AI diseases. So if you think about it, our Rheumy's are specialists in a theoretical field. They don't know what will work from one individual to the next, so that's why it takes so long to find the right drug cocktail and even longer to put a name to what we have. So many AI's mimic each other and other diseases as well. And many of us have combinations of diseases. Imagine how hard it is for a person with mulitple degrees and countless years of school to say
"I don't know".

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Imuran, Neurontin, Claritin, Zantac, vitamin D, Darvocet.

 

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/17/2008 7:59 PM (GMT -7)   
Uh, it isn't that hard to say I don't know, it just means they have to put their inflated egos aside. They are only human.

Just like doctors, I work in a highly specialized field and have many degrees and many years of experiance -- but I ALWAYS say I don't know (but I can find out) if that is the case. As a matter of fact, I don't hire people who can't admit when they don't know, and I hate working with people who won't admit it. If you can't admit you don't know, what will drive you to learn more, study more, achieve more? And yes, my field also changes very quickly and has highly theoretical component's.

My previous very good dr that I wish was still in practice said to me more than once, we don't know about this part of this disease, but we think x, let's see how your particular version reacts...

I do *not* want a doctor, or any other person, working on or near me that cannot admit when they don't know something. I have to admit that the very idea of that as an excuse for getting a dx wrong infuriates me. If you don't know, don't label, don't assume....run experiments, do tests, do research, refer to others, do whatever you need to, but in the meantime ADMIT you don't know. That's no harder for a brain surgeon than for a ditch digger.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Maenad
Regular Member


Date Joined Mar 2008
Total Posts : 20
   Posted 7/18/2008 6:19 AM (GMT -7)   
Doctors in general, yes. It's pandemic.


Years ago, I took care of a partner who had (still has, that is, altho she dumped me) AIDS. She was very symptomatic and unable to work.



One day, after years of dealing with this, some clueless ****** resident at the ER, a fellow who'd never seen her before, decided that she probably didn't have HIV. (She was on about her 17th 3-inch-thick chart, and the original poz test results weren't in that one.)



So he ordered an HIV test. In those days, it took a week to get results.



She was completely maniacally insane for that week. She was planning her future in a way that made no sense considering the prognoses available to people with active AIDS in those days. She was attempting to do things that caused her injury because she had paralysis on her right side and she really wasn't up to doing those things.



And then, when the test inevitably came back poz, she spiraled into a severe depression. She tried to harm herself.



It was hideous and so unnecessary.



I understand about docs being fallible and human, but that was just outright cruelty.


***************************************
Post edited to comply with:
2. No use of explicit, obscene or vulgar language or images and/or messages, including racist remarks.

Post Edited By Moderator (AlwaysRosie) : 7/18/2008 1:31:32 PM (GMT-6)


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/18/2008 10:52 AM (GMT -7)   
Lynn, I didn't mean any offense, please excuse me. I'm just so frustrated. My kid's doc has a wife who has Lupus and he told me today that she's given up on Rheumy's. She's seen a lot. This is one of the major drawbacks of living in a small town. The kid's doctor said that it seems that so many Rheumy's are unwilling to bend from textbook cases. He said they are absolutely brilliant in the book smart kind of sense, they just don't seem as concerned about how we will function in the real world.

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Imuran, Neurontin, Claritin, Zantac, vitamin D, Darvocet.

 

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/18/2008 11:30 AM (GMT -7)   
No offense taken -- just something I feel strongly about. Sounds like she ran into all those drs that can't say "I don't know"....the useless ones. Sigh.

I'm coming to believe that "book smart" is a oxymoron!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/18/2008 4:22 PM (GMT -7)   
I'm just going to tell you guys plain out; I haven't met one rheumatologist that I like or trust. I'm sure there are some out there somewhere that are great but I haven't come across them. They are so skeptical and to me that is in fact infuriating and demeaning and insulting! My nephrologist treats my lupus. Like Lynnwood said, she is willing to admit when she doesn't know something and she does her homework. I really appreciate that. She never doubts the symptoms I report to her and we have built a great trusting relationship. I wish everyone had a doc like her! Doctors with these intimidating, over-inflated egos risk great harm to their patients! Just my 2 cents worth! Judy

Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 7/18/2008 5:25 PM (GMT -7)   
I think JHU's Rhuemy is like your nephrologist. She isnt like so many of the Rheumy's I keep reading about on healingwell.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/18/2008 5:53 PM (GMT -7)   
MJLD-My rhuemy is the best. I agree with you that we all need at least one doc like that-someone we can trust, who is willing to find out instead of always knowing. For some of us that will be a rhuemy for some a nephrologist or some other specialist. I don't particullarly care what they call themselves -my first doc like that was my primary care physician when I first got ill. Once I find one I would stick with them like glue.
Sj

pinksage
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/21/2008 5:50 PM (GMT -7)   

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


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 Pernicious Anemia.


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/22/2008 10:34 AM (GMT -7)   
Well, I've decided not to go back to my Rheumy. My PCP put me back on the Plaquenil and gave me a pred dose pack last week and I'm feeling much better. Rather then being in constant pain even on Darvocet, my hands and feet only feel very tired. Kinda like putting in a full work day. I'm going to try to only see my PCP and if down the road I need another Rheumy, I'll go to someone else. I'm lucky in that this disease has only affecting my hands and feet, skin and of course the fatigue thing. I don't have any major organ involvement at this time, so I think I'll avoid the Rheumy's for a while. It's amazing how much better I feel just knowing that guy is out of my life.LOL It feels good to take control.

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Cymbalta, Flexeril,Claritin, Zantac,Ambien, vitamin D, Darvocet.

 

 


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 7/22/2008 2:12 PM (GMT -7)   

Lynnwood - For your consideration:

"Good Doctor" - oxymoron

"Medical Care" - oxymoron

Just thought I'd add to your collection.  I've been using these for a long time now.  I'm in a foul mood about this very thing today.  My sister is very, very sick and getting nowhere fast.  I "pulled rank" today and am taking her to be seen early in the morning.  It may be the day I lose my composure altogether.  And before anyone tells me how damaging that could be for her doctor/patient "relationship".....I already know that.  Not sure it would be any huge loss...except maybe for them to miss the opportunity to actually DO something for her.

Needed to vent.  Sorry.  And thanks.....


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/22/2008 2:44 PM (GMT -7)   
I don't think there is anything at all wrong with "pulling rank" -- if your sister is ill enough to allow you to be her strong advocate, then I am very, very happy that you can be there for you.

There are many on this board and elsewhere that are also very ill and don't have anyone to grab the reins and advocate for them....too many wishy-washy family members & friends who like to say "you should..." without taking a minute to SEE that the ill person just doesn't have the wherewithal left to advocate for themselves.

I hope you are able to make progress and find a good doctor - I have had one so I do know they exist, however rare they may be.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 7/22/2008 3:21 PM (GMT -7)   
Lynnwood - I am scared.  I wrote a whole bunch more after that one sentence, but deleted it all because that is the bottom line and should hopefully explain my frustration level.  I'm not even sure they are looking in the right direction any more and, like you, I would have a lot more respect and confidence in any one of them who would look us in the eye and say, "I DO NOT KNOW." 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/22/2008 6:21 PM (GMT -7)   
There is nothing bad about being afraid. What is that saying "courage is fear that has said it's prayers"?

Keep talking with us...this is a good place to vent, and probably better than saying nasty things to doctors.

Hang in there,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

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