The Sarcoidosis Doctor Hall of Shame

The Sarcoidosis Doctor Hall of Shame

I know its not very nice to pick on doctors; but what the hell, sometimes the little boogers ask for it... in spades. In my time on the website I have read the most outrageous things that doctors have said, inferred, and prescribed to we Sarcoidosis sufferers. Sometimes hilariously stupid, sometimes inexplicable, frightfully callous, and almost always tragic for us and our cause.

So here I would like to start a thread of your candidates for the Sarcoidosis Doctor Hall of Shame. Here are some guide lines:

1.) No doctor's names please; but do indicate what type of doctor, ie: GP, Pulm, Neuro, Rheum, Ankle-yanker, Holistic Shaman, etc.

2.) Keep it short and sweet; one or two sentences.

Here's one from sarcoidjeff, our friend in Alaska (too funny) I nominate his "civilian" pulmonologist:

"Last July when my sarcoid flared really bad a "civilian" pulmonologist told me the answer to controlling my sarcoid was to lose weight by portion control!"

and one from me:

"I nominate my beloved GP Doctor Do-Very-Little. His standard reply whenever I bring up Sarcoidosis is 'Don't vorry, it's benign' regardless of my question or context, Its like his little circuit breaker protecting his ego from admitting ignorance."

Talk about therapeutic, here's your chance to nominate your own Physician or Medical Professional bonehead where what they did will live on infamy in the hallowed halls of The Sarcoidosis Doctor Hall of Shame.

Okay, lets hear your nomination...

By theGardener
Posted October 2, 2007 at 11:41 am

I dug this one up from our good friend Jjohnson in the United Kingdom. Here she relays her conversation with said nominee:

"I've lost some colour from my vision, and occasionally I see these little black things that seem to float about"

"That's probably some kind of debris, nothing to worry about"

My friends, I really do not want this to literally become a case of The 'blind' leading the blind!

By jacquepogo
Posted October 2, 2007 at 2:59 pm

About 2 months ago I was diagnosed with lymphoma with over 30 masses (groups of those granuloma things) all over my body then Sarcoidosis after surgery. Both my pulmologist (Dr. Crackhead) and the Thoraic Surgeon said it was a very complex case. As of last night I was told to stop all meds and Dr. Crackhead says I am fine. On what f---ing basis. This treatment was to be for 6 months( It has only been 3 weeks). Oh ya remember I told of his nurse and now I am dismissed.

By Mani
Posted October 2, 2007 at 3:55 pm

Picture this.....three specialists

ENT "sorry hun, can't help with that, you should ask your primary sarcoid specialist.
PULM ""well any symptoms above the neck are not my area of expertise"
Rhuem "Well, I'm not your "primary" pulmonary sarcoid specialist"
MANI "Somebody please help me!!"

By Audreymac
Posted October 2, 2007 at 8:37 pm

I nominate the pulmonologist I saw who knew NOTHING about Sarcoidosis. As he was taking phone calls during my visit he said:

"Oh your pain has nothing to do with your Sarcoidosis, You need to exercise and lose weight". He took another phone call then he proceeded to pat me on the head as he walked out saying, " you'll be fine dear". I had gained 40 pounds from being on 60mgs of Prednisone for a year and a half. After going to Mayo Clinic they said my lungs were so scarred, that if I could breathe okay the Prednisone was useless. They could not believe all the Meds I was on . Methotrexate,Fosomax,antiboitics you name it. That was in 2004-2005. I never went back.

After being a nurse for thirty years I had never met a doctor so inept and rude.

By signl3
Posted October 3, 2007 at 9:11 am

...the ER doc who when I couldn't breathe and had finally gotten so fed up with the chest pain said calmlly - " well,what do they usually treat you with?" and proceeded to read the webmd summary of sarc while i was watching......and of course the primary who told my husband that the MRI with all the granulomas was nothing - everyone has them in their liver ,spleen,etc.

By Dawn1973
Posted October 3, 2007 at 9:38 am

I nominate:

1.) My pulmonary specialist who when asked a question regarding Sarc in a different part of my body replies with "Well, I see you as a pair of lungs. My job is to make sure they are working". (Well gee, at least he doesn't think like most average guys and only see me as a pair of breasts!) LOL!

2.) The primary care doc who always responds with "I don't know anything about Sarcoidosis except what I learn from you" Gosh buddy, its been a few years, you'd think you might try surfing the web or picking up a nice big book at the medical library???

3.) The eye doc who cannot pronounce Granulomas properly! (and insists I do not fit the sarc profile as I am not an african american male!)

4.) The triage nurse in the ER wh says...."you have Sar.....What????"

Be Well
Dawn

By melissa_e
Posted October 3, 2007 at 3:05 pm

My ex-rheumatologist spent the entire appointment trying to talk to me about the best place to walk his dogs in our town! I had to redirect him with questions about my sarc repeatedly. I thought my husband was going to come unglued. I now have a new rheumatologist that isn't very impressive either. But they're the only two choices in town. My best source for care and knowledge is my FNP and this website.

By Page
Posted October 3, 2007 at 4:44 pm

I still have pain after being on a really high dose of Prednisone for six weeks.
She says, "you should be feeling better by now."
"But I'm not."
"All my other patients have reacted by now"
"But I'm not"
"Okay lets raise your dosage"
...3 weeks later
"I'm not feeling any better"
"You should be feeling better by now"
"But I'm not"
"All my other patients have reacted by now"
"But I'm not"
"Okay lets get you to a rhumatologist because you probably have something other than Sarcoid that would give you joint pain and shortness of breath"

Getting a second opinion on Friday!

By Bevyloo
Posted October 3, 2007 at 9:12 pm

I guess in all respect to the Medical field and the fact that we are ALL human...I won't submit any comments to bash any doctor or clinician. Although I could probably tell many stories...I will refrain. After all we are ALL human and do make mistakes and do not know EVERYTHING. It takes a very BIG person to admit that...and that is all I will say.
Admitting I am very human;
Bev

By sarcoidjeff
Posted October 3, 2007 at 10:11 pm

there was a nurse practioner I saw a year ago as no one else was available that day - I told here I had Pulmonary Sarcoid and she argued with me there is no such disease as Sarcoid, that it is Sarcoidosis!!!!!!!!! I gave up after politely "arguing" with her that Sarcoid is the same thing as Sarcoidosis, just short for it. Some how I lost that argument.

Jeff T.
North Pole, Alaska

By theGardener
Posted October 4, 2007 at 7:46 am

Jeff

Please refer to our Sarcoidosis Glossary of Terms for the definitive answers:

http://stopsarcoidosis.clinicahealth.com/blogs.pl?op=display&id=540

This my help your future argument case.

T.G.

By RuthfromOz
Posted October 4, 2007 at 8:50 am

About 6 months after moving away from the terrific doctors who first diagnosed me with sarcoid, I began to experience a flare up, sending me looking for a new doctor. I located a wonderful GP, who referred me to a thoracic specialist. He decided I needed to see the surgeon he shared rooms with to have a biopsy done, because the neither of the doctors involved in the initial diagnosis were thoracic specialists. The sarcoid was in my eyes & parotid glands at the time of diagnosis.

I didn't bother seeing the surgeon. My GP organised a fine needle biopsy of the permanently enlarged lymph nodes in my neck, which confirmed the sarc dx. I eventually returned to the thoracic doctor when I went into a major flare-up last year, and he again wanted his mate to do the "slice & dice". Obviously he doesn't trust the diagnostic abilities of other doctors, whatever their specialty...

By the way Jeff, the reason we shorten it to sarcoid is because we can't breathe enough to say sarcoidosis...

Ruth

By RFischpera
Posted October 4, 2007 at 9:50 pm

I can't really say anything bad about my doctors I know they are trying. I would like to blame the whole medical field for there lack of research on sarcoid. I have had sarcoid since 1990 and would flare up every now and then. They like to give out predisone like it's candy and it's only because nobody takes this illness as a true diesase. I live in Rochester, NY with a great reputation for medical studies, but sarcoid is not high on the list. I also feel if this was a cancer like illness it would study more. I now have sarcoid in the lungs and in my bone marrow with some cysts on my spine. We need more exposeure as if this were cancer. I do feel that sarcoid and cancer are retated somewhere.

Rick

By WendyQuicke
Posted October 7, 2007 at 2:42 am

Well my GP seems to think that there is no way sarcoid can make me sooo tired and referred me to a sleep specialist!!!! And then another GP referred me to an immunoligist who also referred me to a sleep specialist because he thinks that my sarcoid has gone (why, how?). So then I tried another GP who coincidently was advertised on this site, who proceeded to tell me he knew nothing about sarcoid but that was alright because he treats people not diseases. He then told me that he thought I was tired because he thought I had chronic fatigue that was caused from an emotional blockage !!). And all this with chest Xrays, CT scans showing enlarged lymph nodes, coughing up blood and abnormally low cortisol levels (which can be caused from autoimmune diseases). Lucky for me I found a natropath that knows more than all these turkeys put together!

By minerva
Posted October 7, 2007 at 5:39 pm

Bevyloo, I don't accept this. I can't accept this. Doctors are the ones who took and oath to treat and do no harm. It is their job to find out and help all they can. But too many of them for reasons of arrogance, ignorance or just plain indifference are not willing to. My sarcoid has gotten to the point where it is interfering with my job. My supervisor is trying to find me an easier less stressful one within the company, if she can't I am jobless. Self-supporting, middle-aged and jobless. And with Sarciodosis.

I think most of us are more upset about doctors' indifference and thougthtlessness rather than their mistakes. The fact of the matter is, those of them who do not do their job and are simply dismissive of that which they do not understand should lose THEIR job. Just as I am about to lose mine.

Sorry for the thread drift Mr. Gardner

By Bevyloo
Posted October 8, 2007 at 9:42 am

Hey there Minerva,
Please don't misunderstand my postion. I am not saying that Drs. shouldn't do their best to educated themselves in these things as well as others to better serve us and the community.,that IS theri job and the oath they took to serve their community... I believe it is imperative. It better serves everyone when they do. I have met with countless Dr.s that seem or feel "incompetent" to me as well, in certain areas, and it is extremely frustrating to me bing I am a health care professional myself. And.......I agree...too many, WAY too many of clinician's ARE arrogant and think they know it all and will NOT admit that they don't....which can forgive a multitude of sins........Some will and referr you on and try to help....but I agree, that it is rare to find that. But, my point here is this....We have to be in charge of our own health and health care and push. push, push...And...believe me I understand how trying that is. I have dealt with that ALL of my life. But, in this human race that we have there is not ONE person out there in this world that has not made a mistake and is not human and has "messed" up royally at times in our lives and from the things I have learned in my life, it just does me absolutely NO GOOD to "bash others" or cut them down. And, I am not even saying that we need always to forget...forgive yes, but forgetting makes us repeat our mistakes or fall into other's mistakes all over again. I hope this makes sense. I have just learned that it does me absolutely no good to point fingers at others....even thou I have and I want to and its difficult for me not to......I try really hard not to. If I need to confront some jerk, I pray that at the time, I will have the will, the strength and the knowledge to do so.....or just learn for the next time...and help others to learn from my mistakes.......Anyways...I hope you can see my point. If not thats ok. Take care, Bevyloo

By theGardener
Posted October 8, 2007 at 9:56 am

Minerva and Bevyloo

You both make excellent points.

We should not accept a doctor who is comfortable their own arrogant-wrapped ignorance

and

By resisting the temptation to believe that our doctors are anything more than fallible human beings (and not the demigods they believe themselves to be) we ourselves are better for not harboring ill will.

We all know there are many excellent doctors and health workers that go above and beyond everyday. My only reason to start this thread was to showcase the worst of the worst- not for their sake - but for ours. To vent. I know my beloved Dr. Do-Very-Little means well, and is excellent in many respects, but sometimes his behavior makes my head want to pop off in frustration.

Its a love hate relationship I guess. LOL!

TeeG

By purple
Posted October 8, 2007 at 12:04 pm

When my sarcoid flared up so badly that I could not ignore that something was wrong and my legs were covered with EN I went to an orthopedic surgeon because of the knee pain. (I have had knee problems in the past and I had neverheard of sarcoidosis),

The doctor examed me, took a couple of x-rays and scheduled me for a complete knee replacement. It was only while I was sitting at home waiting for the surgery date that it became evident that something else was going on.

I diagnosed my self after some online research and took my dagnosis to my internest on a sticky note. She scheduled a chest x-ray and confirmed the sarcoid. I'm lucky that the surgeon didn't have any earlier surgery dates avaiable. The last thing that I needed at that time was major surgery!

Kathy

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