Understanding the doc's perspective

It seems like everyone here is dealing one way or another with being misunderstood by physicians.

Sarcoid is systemic. It rears its ugly, painful head anywhere and everywhere. So why does the pulmonologist just pay attention to the lungs? And why do the other specialists keep sending you back to the pulmonologist?

It took me more than a year of hearing this from my pulmo for it to truly sink in. "It has to be objectively measurable to be treated as sarcoid." Translated that means scientifically repeatable to come up with the same information.

Like many of you I have neuro symptoms, loss of taste, smell, double vision, numbness, word loss, balance, pain, etc. But the MRI didn't show masses, the ENG, EMG, spinal tap, visual tests didn't show major discrepancies that are measurable by their tests. So I am not treated for neuro sarc, (my symptoms ARE treated but not by sarc meds.)

I also have cardiac. The cardiomyopathy, irregular heart rhythms, high blood pressure, was what started the whole thing for me. BUT, since the sarc diagnosis came AFTER the cardiac issues, the cardiac symptoms are not being treated as sarc. I have regular echos, holters, EKGs, etc, but until objective proof of sarc in the heart, only symptoms are being treated by medication and close monitoring.

My pulmonologist listens to my top issues, sends me for evaluation and elimination by other specialists. For instance, loss of hearing, taste, smell and hoarseness to complete loss of voice. He sent me to an ENT with these instructions, "Let him check you, don't tell him it is probably sarcoid." It was very confusing at first.

I thought, "Does he think I have a hundred different things wrong with me?" I understand better now.

He wants the specialists to be allowed to think scientifically and objectively before just brushing the issues under the Sarcoid Rug.

I had audiology tests, CT of sinuses, a scoping of the sinuses, a couple rounds of antibiotics, daily nasal wash, antihistamine nasal spray and tubes in the ears and back to the care of my pulmonologist because the tests were not showing measurable objective data to use sarcoid treatments.

I've been measured and scoped by the gastroenterologist-colon to throat, urologist bladder issues, endocrinologist thyroid and other, electrophysiologist heart wiring, gynecologist fibroids, allergist, rheumatologist, joints and weird symptoms, dermatologist lumps and bumps and skin things, nephrologist, opthamologist eyes, neurologist. I know someone that scoped measured and tested me is left out, but you get the picture.

It comes back to the pulmonologist, because my breathing tests show objective, fairly scientifically repeatable decline in function. The x-rays and cat scans show the fibrosis and active inflammation. The pulmonary function tests show the measurable changes and whether the treatment is having any impact. He asks careful questions, How many steps can I go up before I am short of breath? How far can I walk on a level surface before I need to stop and catch my breath? During my daily 30 minutes of walking, how many times do I need to stop to rest?
He is teaching me to separate myself from the disease and be a careful observer to be able to help myself and him. It seems weird at first, but it is very empowering once you understand the whole process.

When I ask him about the other symptoms and why they are not an issue to be treated with prednisone, his response is, "First, do no harm." Prednisone is a good tool used correctly.

After I've seen the different specialists, he agrees that whatever the current issue is, is probably sarc, but since it isn't measurable, it isn't reason enough to increase the prednisone.

My primary care doctor is the one I turn to for symptomatic treatment of issues that impair my function of living or quality of life. The other specialists treat the symptoms and see me periodically to see if things have worsened or if sarc is "objectively" present.

When we advocate for appropriate medical care, it is important that we try to understand what is behind the physicians reasoning. Be organized, limit issues to bring up, follow their instructions.

Sarcoidians are a difficult breed of people. Our disease doesn't follow the rules. It looks different in every patient. Just when your doc gets you settled in a treatment, it changes or attacks another part of your body.

Your physicians truly do care, it is as frustrating for them as it is for you because they can't make you better, and sometimes the treatment makes you worse.

Be sure to thank them. Thank them for listening. Thank them for caring. You can be sure that once they take you under wing, they will be learning about sarcoidosis along with you.

To all our medical people, I wish you peace and blessings. Thank you for all you do!

By Tawney
Posted December 15, 2008 at 7:33 pm
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Hear what you're saying and it makes sense. I've mirrored your being measured by a variety of specialists experience. Yes, to the variety of neuro symptoms. Tests most often show results not quite right enough to be normal but not quite wrong enough to be clinically significant.

You said something that makes me pause to think...that the pulmonologist is always the main doctor in sarc. Makes me think that the pulmonologist validates the sarc, which can validate the other symptoms.

For some of us that validation is missing. I can never comprehend how I can be in so much pain and imaging show nothing. No-one's ever suggested I see a pulmonologist. I have breathing difficulties upon exertion or anything that stresses my breathing, can't hold my breath etc but my chest x-ray is clear. Prior to this I was very fit. Strenuous exercise might have made my muscles sore but would never have affected my breathing. These days, a short sprint for 90 seconds with the dog has me gasping and coughing. The dog's a wolfhound who thinks this stop start thing is a game and licking me whilst I'm coughing is just the thing and all in all, we must look pretty ridiculous.

I think once you get a diagnosis, the oddity of other non-measurable symptoms is easier to accept. We all have odd symptoms that affect us but doctors can't find cause for, so even if the why isn't clear, it's assumed they must be sarc caused.

For those of us without a diagnosis, we're still stuck on the tests show no real cause so the cause must be in your head scenario. That's a real bind and I don't know about others but it trys my patience.

May I ask what the ENT you saw said? I saw one a couple of weeks ago who all but accused me of falsifying my blood results and taking calcitriol. I'm a bit cynical at the moment - 2 useless, bruising specialist appointments in the last couple of weeks. I'll snap out of the mood at some point.

By Smileyface
Posted December 15, 2008 at 7:56 pm
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I too, at times have felt sorry for my physicians. I have excellent physicians who are really caring and who get so frustrated when they feel like their hands are tied. They know you are suffering but they don't know what to do to help. Yes, the Pulmonologist is the "Captain" of the team. If it warrants he sends you to a specialist to try to treat the symptoms you are experiencing in their particular specialty. That's all that can be done. Since no one knows the cause of sarcoidosis, there is currently no cure so all the doctor(s) can do is to treat the symptoms.

I know what you mean when you say that you have had just about every test/procedure known to modern medicine. This is b/c, the physician has to rule out any other medical problem with those symptoms. Diagnosis of sarcoidosis is still one based on exclusion, which is why it may take a LONG time to finally get a diagnosis.

By shadowtoonces
Posted December 15, 2008 at 8:17 pm
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I would have never come up with this in a million years. Thanks for putting it into this perspective. Right now, my anger is directed right at doctors. Just not having a good night, the tapering of the prednisone is not going very smooth at this point and I just can't make it to whatever I plan. Yes, I know things could be a hell of a lot worse and I will get better. I'm trying to stay positive. We are working things out to head up to the Mayo Clinic to have that up and going just in case my lung doc appt on Monday goes south. And that that's all very frustrating too. I know Im not the only one going through this, but I am glad that I read your post because it reminds me that I'm wasting what energy I do have at this time on anger, which is energy that I don't have and gets me nowhere. And it also reminds me to take it a little bit more easy on the docs....I'm a nurse too, so doctor bashing comes quite easily, but everyday, now that I'm the patient, my thinking is changing.
I will use my energy for prayer......I knew God led me to this website for a reason. I really do feel better after reading and posting.....u guys rock and will be praying for you all, Dawn

By Teacherteacher
Posted December 15, 2008 at 8:52 pm
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Hi Tawney,
Thanks for your thoughtful reply.
The ENT found polyps and inflamed sinuses. He didn't want to do any surgical removal because of the sarcoid, scarring could become active. He recommended twice daily sinus wash with 1tsp betadine added to the saltwater wash. He felt that was best to keep infection out of the inflamed sinuses.

Your point about accepting the odd symptoms after a diagnosis hits home for me. My story started with my heart and went from there.

Have you had pulmonary function tests or cardio pulmonary exercise tests? My lung components didn't show up until I had an excellent radiologist with better equipment. Then everyone went oooh, now we know. (My local hospital still can't find the sarc on their chest xrays).
Good luck. I hope you get some answers.
TT

By Teacherteacher
Posted December 15, 2008 at 9:16 pm
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Hi Dawn,
I am sorry to hear of all the frustration you are facing.
One tip, I went through the Mayo in Scottsdale. My neurologist sent me to the neuro department and they ran their tests and had nothing conclusive. The neuro there said I should have come in through internal medicine so they could look at the big picture. I called and there had been a cancellation for the next day.
It was a completely different experience, with lots of answers. Be organized, bring all scans and test results. Follow Paradox's form to write your med history. Do this wherever you go.
Keep a journal. Record your activity. Get outside in the sun early in the morning. It helps your body readjust to the prednisone.

Taking Aleve morning and night, not just when I'm in pain is wonderful prevention.

Good luck with your doctor appointments!
TT

By Tawney
Posted December 15, 2008 at 9:59 pm
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Thanks Teacherteacher

I neglected to say I found your post extraordinarily useful. That's interesting that the sarc doesn't show on all your chest x-rays and something for me to keep in mind...that a clear x-ray doesn't always tell the story correctly. No, to any of those pulmonary tests...no-one's ever suggested them. Something else for me to keep in mind.

I tend to put the cart before the horse and my current doctors seem to have misplaced the cart and I think they misplaced the horse too!

I should be counting my blessings that I've never had a major dilemma that's landed me in hospital or some of the dreadful things happen that others have experienced...I do know that. I have to plead guilty as Shadowtoonces did to directing my anger at doctors.

One more question, the better radiologist with the better equipment - was that still a standard x-ray without contrast? I got a great mental image of a roomful of people in white coats standing saying "Oooohhh"!

By Teacherteacher
Posted December 15, 2008 at 10:42 pm
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Hi Tawney,
I love your humorous imagery! It is considered a standard x-ray, but it is all computerized, no film. My pulmo looks at it immediately after it is taken. He can roll through the image front to back and top down. It looks almost as detailed to me as a CT.
So much depends on the eyes that are reviewing and their knowledge.

By Chatch
Posted December 16, 2008 at 10:37 am
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Great post Teacherteacher!

I also have a question about your sinus treatment. Has your doctor suggested using nasal steroid spray, such as Nasonex or Rhinocort? I'm asking because I, too, have sinus issues whereby my sinuses don't drain properly which in turn cause me to experience a weird problem/sensation when talking where I feel that I'm hearing myself inside my head or my ears don't pressurize quite right. I can't really explain the sensation, but after trying to describe it to my ENT, he ran hearing tests and performed CT scans which showed a small crook in my ear canal area which causes the improper "draining." Luckily no polyps - - yet. His recommendation is to use two puffs per day in each nostril of Nasonex to alleviate the swelling/inflammation in the sinuses. The problem has greatly decreased and I can talk properly. The side effect of dryness in the nasal passages is alleviated by using saline nasal spray a couple of times per day.

By Teacherteacher
Posted December 16, 2008 at 10:55 am
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Hi Chatch,
Yes my ENT has me on Astilin and Rhinocort sprays. The tubes they recently put in my ears have made all the difference. Now I can understand conversations without having to watch the mouth of the speaker.
You give up a lot as your body changes with this disease. Sight and hearing are up at the top of the list to fight for.
TT

By gonenatural
Posted December 16, 2008 at 5:17 pm
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Hi TeacherTeacher,

You sure have taught us a lot today.

My immunologists has dx'd me but I am still working on other issues and the tests and drs, have been there and still going. Working hard with a gastro who is confused and finally confessed my sarc dx. I waited a long time before telling him. Another dr has told me that sometimes telling dr less is best and Paradox says when you see a dr bring up the 3 most important issues and work on those 3.

One dr aft another has sent me to other drs just to be checked out. My pcp thinks I am nuts and unknowingly until today I found out she has prescribed depression meds. I am far from manic depression. I am sure we all have our depressing moments but I am not chronic.

I do and always will faulter on my daily diary but I do have most of my records for the last 3 yrs.

Thank you and hope all is well with everyone

By LKS
Posted December 16, 2008 at 6:50 pm
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Dear Teacherteacher,
Thanks for the post. It was quite informative. You mentioned that everything started for you with cardiac symptoms: cardiomyopathy, irregular heart rhythms, and high blood pressure but that you're currently "being monitored" but not treated. I'm not sure what that means. Have you had a cardiac Pet Scan (to show activity/inflammation in your heart)? Have you had an electrophysiologic study of your heart with Left Ventricular mapping to determine whether you have scarring/fibrosis or a granuloma that might cause arrhythmias ? Has anyone suggested a cardiac MRI? You sound as though sarcoid as effected your heart which doctors are finding out occurs more often then previously known. It often involves the conduction system which is why it can cause bad rhythms. Please make sure to follow this up with your cardiologist.
LKS

By Teacherteacher
Posted December 16, 2008 at 7:44 pm
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LKS,
Thanks for the concern. I've had an EP study, holters, echoes, but no to the cardiac MRI or PET. My cardiologists are keeping a close eye out (monthly) for sarcoid involvement. At this point they are treating cardiac symptoms with cardiac meds. I'm already on long term prednisone for lung function and the docs say the treatment would be the same with the prednisone. I'll ask again about the cardiac MRI.
TT

By LKS
Posted December 16, 2008 at 7:59 pm
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T-
The medical treatment (prednisone) would be the same--although some folks swear by methotrexate for cardiac sarcoid. However, a pacemaker/defibrillator may provide a lot more protection. I just got one on 12/12/08.
LKS

By Teacherteacher
Posted December 16, 2008 at 8:25 pm
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LKS
My primary and cardiologist and I have had the discussion about the pacemaker/defibrillator at the time of the EP study. They want more "objective" evidence before going that route. The symptoms I had at the beginning of this have settled down. If they return, I will push for more.
TT

By minerva
Posted December 28, 2008 at 3:23 pm
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I will think more kindly of the medical profession if they will just once accept the fact that I have pain, try to find a solution to end the pain and most of all, admit there is a problem.
I have been told too many times by the arrogant doctors that what I am feeling does not exist. I had been having problems long before be I was dx'd as having Sarc and when I was, they would look only at my lungs up until a couple of years ago when I had a septoplasty and Sarc cells were discovered.
I will think more kindly of the doctor who researches all he or she can on this disease.
But most of all I will think more kindly of the doctor who actually comes out and tells me "I don't know."
Somehow, it's always easier for them to blame the patient than accept the symptoms as real.
I know some of you have had good luck and your docs are trying to help you. I haven't come across one yet who has done that. But maybe some day......

By Salt
Posted April 3, 2009 at 9:01 am
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Minera, its a very frustrating situation, but a large number of GP's are locked into a purely medical model (and specialist the percentage of those that just do "disease management only" in the medical model is even higher), if they can't see it and measure it objectively, it doesn't exist. The old adage of "My pain is real, everyone elses' pain is suspect" applies. Sometimes it does some good to remind them by asking them "You ever have something hurt? Leg pain from doing something the day before...Back pain from doing something? Could you go and have that objectively measured? No? Why not?" Sometimes it doesn't. I find the best thing for getting them to listen is to walk them through your day and how its affecting you, and simply ask them "If you can't do anything for the cause, can you at least make the most troublesome symptoms tolerable?" (Though this is frustrating if you don't have a diagnosis of any kind.)

TeacherTeacher, what an excellent post. I've had dozens of referrals and tests ran by different specialists. In particular when I describe the neurological symptoms they tend to worry enough to send me out (even though we know what the cause is). Its very frustrating to have CT's come back that can't explain why I'm getting hearing loss, loss of taste/smell, or sudden changes in my vision, amnesia and memory problems, balance problems, myopathy..etc..etc. They sent me for nerve conduction tests, they came back within the normal range. The MRI's showed some interesting things, but not enough to be conclusive. The blood work? Waste of time to run most of the standard blood work, I already know the results before they are run, they will like the last 20. I've gotten to the point where I ask "If we test this, is it going to change how we treat?" And if the answer is No, I tell them no. If there is a compelling reason to rule something else out, I'll consider it... I do keep in mind that not everything is sarc, and I *might* have something else going on. If something is truly unusual and outside of the bizarre combo of symptoms I've come to live with and call "normal" ...I'll go ahead with it.

I think part of where we run into problems is that we want the docs to know and stick in the chart "Hey, I'm having hearing problems from this. Or I'm losing my sense of taste, or ability to tell temperature with my [insert body part], or my muscles are weak" and we want to hear back its from this or that, and either its expected/probably from this, something I can help you with, or nothing to worry about. But when it results in another round of being poked and prodded in uncomfortable and possibly dangerous ways that don't give us any new insights, we start getting reluctant to even mention some of the bizarre things going on.

By Teacherteacher
Posted April 3, 2009 at 11:44 am
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Salt,
Good post! You are so right about reaching the point, "NO MORE PROCEDURES!"

The only procedures we (my husband, doc and I) agree to are if the situation is life threatening or if the symptoms interfere with life functions.

Otherwise the focus is on coping mechanisms.

TheGardener has brought up many times how nodules appear and disappear around the body.

Something that helped me understand the "mystery pains" was googling "lymphatic system" images. Between the nerves that are everywhere and the lymphatic system, it can account for almost every weird pain.

Welcome to Inspire!

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