Monday, 14 March 2016

Reach

When I started this stupid blog, I could have never imagined the reach it would have.  I'm pretty sure I've said that before, but whenever I try to use my brain to dredge up old memories, something newer and more useful probably gets jettisoned, so I try to do that as little as possible.  While searching the bowels of my memory I may accidentally forget how to take out a spleen or something.

Anyway, when I say "reach", I don't mean geographical reach.  At least not this time.  I've covered that in my hypocritical various milestone posts.  Rather, I mean the impact that it could potentially have in people's lives, beyond trauma, beyond surgery.  But Veronica (not her real name™) kindly emailed me and did the work for me.
Hello Doc.   
I found your blog while looking for information on Jahi McMath.  I kept reading because I found it interesting and educating.  You said you like to get responses, so I am giving you my response. 
I am 50-years old and have had pain in my joints since I was 10.  Diagnoses ranged from "I don't know" to systemic sclerosis.  Every doctor had a different answer.  When I was 40 it was discovered that I have celiac disease.  That made my doctor at the time start looking hard at my immune panel. 
I was sent to a rheumatologist who kept testing me for lupus.  I don't have lupus.  Whenever I questioned a new symptom, he would wave his hand and say it was nothing.  Swollen joint?  It's nothing.  Scaly patches on my leg?  It's nothing.  Scaly patches on my forehead?  It's nothing.  After reading your blog, I went to my primary care physician and requested a referral to a different rheumatologist. 
I saw the new doctor.  She read the entire new patient form and paid special attention to the list of diagnoses and how long I had been complaining of pain.  She *looked* at the swollen joints, all of the scaly patches, and even the severe dandruff.  She said she suspects psoriatic arthritis, and sent me to a dermatologist. 
The dermatologist looked at my skin, took a sample for biopsy, and reassured me that the patches looked nothing like cancer.  The tests he did all came back negative, reinforcing his belief that I have psoriatic patches, which he expects to see on patients with psoriatic arthritis. 
I know that psoriatic arthritis is a painful condition.  I have had pain for 40 years.  I know that the pain will only get worse, that it cannot be stopped.  I am fine with that.  Medicine cannot cure everything yet.  I am disgusted that it took so long for someone to *listen* to me and *look* at me.  My medical history told the new doctor what was wrong.  Now she knows what treatment needs to be done. 
I would still be with the original rheumatologist if I had not read your blog.  If I had not read your words about doctors listening to patients, I would not have requested transfer to a different doctor.  Thank you for that. 
To add to all of that, I have complained about severe pain, numbness, and immobility in my right shoulder for 19 years.  6 doctors in 3 states have seen me for it.  I have had physical therapy, drugs, and even told it was all in my head.  As it turns out, the rotator cuff requires surgery to be repaired.  The new rheumatologist is the only one that ordered tests to actually see what is happening in the joint.  It could have been fixed 19 years ago, but doctors just didn't look or listen. 
Thank you for posting your blog.
While I would never be so arrogant to claim that she's better because of me, I . . . actually, you know what, goddammit yes I will.  For once, I will take credit.  Ok ok, maybe Veronica is not actually better, but at least she now has a diagnosis.  And that's something, right?

What surprises me most about this is that Veronica's first doctor thought it was lupus.  He should have known that it's never lupus.

27 comments:

  1. Something similar but less dramatic happened with me.

    I had an awful clawing pain/feeling in my throat, the doctor told me it was a Hiatus Hernia because I was so fat.

    I lost the weight and went from morbidly superobese to "normal" but the pain remained and they wouldn't fix the supposed hernia. Then I started getting cramping stabbing pains in my lower chest/upper abdomen, right under my lowest ribs, on the right. Oh, that's just gallstones because you lost all that weight.

    Gallstone scan came back clear.

    I changed doctors for this and a few other reasons.

    New doctor heard the progression of symptoms (over 4 years) sent me for a gastroscopy, and, Bingo! Duodenal ulcers.

    Antibiotics cleared them right up in a matter of weeks, but the idiot doctor I saw before kept me in pain for 4 years instead.

    Seriously folks, you know your body best, take charge of your health. If your doctor won't listen, find one who does! It can be the difference between misery and happiness, and in the worst cases, life or death.

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  2. I had a patch of scaly skin on my neck for about a year so I went to the doctor about it... Several doctors and a dermatologist. Everyone kept telling me it was ringworm and prescribed antifungal and steroid creams.

    It took six years for me to find out I have skin cancer and get it treated. By time I finally got it taken care of, the spot on my neck was the size of a half dollar coin and I had spots popping up elsewhere too.

    I'm thankful for doctors like you who don't just write off my family history and symptoms. The one that finally caught it only did so because he took the time to listen to me and considered the possibilities. The others didn't catch it because they just figured I was too young for cancer.

    Anyways, I just wanted to help add to your ego a bit. Continue to be awesome DocB.

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  3. Yes, in fact, she is better because you told her that she should be listened too. On the other hand, I don't want to talk to my doctor about the scaly patches on my arms and legs. If I talked about that and the million and a half other things that bother me, I'd have to be his only patient. He wouldn't have time for anyone else.

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    1. Hi Lisa - I would disagree; if your scaly patches are causing you pain or discomfort, and aren't just dry skin irritation during the winter months that can be taken care of with over-the-counter moisturizers, you owe it to your doctor to let him know. Everything in your body is somewhat connected to everything else, in one form or another. Scaly patches, pain anywhere that doesn't resolve itself in a reasonable amount of time (like a pulled muscle or nasty case of gas), or anything else that isn't 'normal' and doesn't go away should at least go into your medical records for future diagnoses. I'm not a health care professional, so I could be way wrong on this, but I think it's at least helpful for docs to be able to pull together a complete picture of your overall state of health.

      If you get a doctor who isn't really listening to you this info probably won't matter anyway, but for the ones that are it might be useful.

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    2. Lisa, if it bothers you, tell your doctor. "but what about the ohter patients" this might sound strange but think about yourself in this situation, be selfish and take the time you need.

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    3. Seriously Lisa?
      Again with the "I'm not honest with my doctor because..."? According to you, you either intentionally withhold information from your doctors because they are too judgy or don't tell them everything going on with you because it would keep them too long. And yet your problems are not being addressed to your satisfaction. How surprising. Perhaps you could grow up, be honest about your problems, give your doctor a fighting chance to help you, and GET BETTER!

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    4. Wow Anonymous, preachy and judgmental much? Grow up, really? You don't even know me. I see my doctor at least every 3 months. Hypertension, Hyperaldosteronism, Pernicious Anemia, Cancer recurrence and the late effects of previous cancer treatments are always on the docket. The scaly patches on my arms and legs and that my hair has been falling out aren't that earth shattering. I was diagnosed with JRA when I was 9. Maybe it's become psoriactic. Oh, well.

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    5. Let's keep it civil, folks.

      Delete
  4. Lazy is lazy all over the world. if there is one thing everyone can take away from Doc's blog, the healthcare field is no exception. (which is to say doc picks up after a lot of lazy people.)

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  5. Grandma Skeptic15 March 2016 at 03:45

    It's like you always say, Doc: if the doctor listens, the patient will tell him what is wrong.

    And of course, it's never lupus!

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  6. I've had too many lazy doctors. A derm who told me my dermatitis herpetiformis (which is actually a manifestation of celiac disease in/on the skin) is controlled by dapsone, and not, in any way, related to celiac, nor do I need the celiac test, nor do I need to go gluten free since the dapsone is controlling it. Also he diagnosed me with psoriasis...My primary care doctor felt the same way about my DH and celiac - no test, just take the dapsone. Took a new PC doctor to test me for celiac (big surprise - very high positive in the blood test), and to actually care about my treatment past the dapsone. Those scaly patches that the derm thought was psoriasis? Was actually part of the DH and went away when I cut out gluten. :(

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  7. Well, it's good to know that even though you didn't diagnose her you got the point across: patients need to speak up and doctors need to listen. If they don't listen, move on.

    Wednesday

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  8. Good points made by everyone who's posted here...if things aren't working out for you, continue to seek answers.

    And, Doc, Veronica IS "better," just because she has an accurate diagnosis now. While we can't yet "cure" everything, in terms of making a chronic condition "go away," we can, almost always, take some steps to better *manage* the condition. Whether it's taking the correct medications, avoiding triggers that aggravate the condition, or getting some relief with appropriate exercise or physical therapy, anything that helps us be more comfortable and functional in our daily lives makes us "better."

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  9. I had a similar situation. 10+ years of abdominal pain on the lower right side. 6+ General Practitioners who would scan my gallbladder, find nothing, and give up. the last GP said it was probably endometriosis "but there's nothing we can do so I won't send you to a specialist".

    found a new GP who took me seriously, sent me to a gynaecologist who did an exploratory laparoscopy who found that my appendix was inflamed. gynaecologist referred me to a general surgeon who removed my appendix and the pathology results came back positive for sub-acute appendicitis. 10 YEARS of pain because no one thought to listen to me when I told them the pain was in the LOWER right side of my abdomen. I'm feeling much better, except I still have some pain due to adhesions caused by the 10 years of inflammation. my appendix was wrapped up in so much scar tissue that the surgeon almost couldn't remove it laparoscopically.

    I'm incredibly grateful to my current GP because he actually listened to me.

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  10. And the HMOs do as much as they can to keep you from hunting for answers when the first doctor doesn't have them. And they try to keep the doctors from even looking when faced with something not clear cut.

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    Replies
    1. Any money not spent caring for patients is profit.

      Delete
  11. So, it appears that your name, Docbastard, has been co-opted by an anti-vaxx loon to try and give legitimacy to anti-vaxxers on a new page created on Facebook. The person who created the page is trolling pro-science pages using your name. Here is the link to the facebook page: https://www.facebook.com/Docbastard-Refutation-Station-201424216889683/

    Judging by the writing, I'm rather sure that it isn't you. I simply can't imagine you calling people 'sheeple'. Anyway, I hope it isn't you, that would be a shame.

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    1. Meh, this was bound to happen eventually. It looks to be my Personal Troll, if I had to guess. He (or she, I suppose) makes the same type of stupid mistakes John does, including saying that I'm a rheumatologist and made a mistake in treating her condition (neither of which is true, obviously).

      Though my Troll at least knows I'm a surgeon. Hm. Maybe I'm just making more online friends. Huzzah!

      Delete
    2. Ha! It is indeed him. He goes by John, and sometimes Jhohn (strangely) and sometimes the last name, Benton.


      He's googled a couple of terms and throws them around to call everyone sheeple and pretends to be an expert. An expert who, instead of sharing his vast (eyeroll) knowledge with the best minds in medicine, or authoring studies, chooses to disseminate his knowledge on the internet.

      The problem is, his schtick is easy to see through and he vastly overestimates his intellect. Cheers, nice blog, by the way!

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    3. he keeps changing the spelling of his name thinking that somehow makes him unrecognizable.

      Delete
  12. My 20-year-old son has repeatedly encountered this same problem and he actually *has* a definitive clinical diagnosis, after being extensively evaluated by doctors at a highly ranked children's hospital 4 years ago.

    My son's diagnosis, Ehlers Danlos syndrome, isn't commonplace but it's not super-rare either. Its singular curse is that it inflicts continuous pain in someone who presents as a healthy, slim, vigorous young man. Doctors frequently either disbelieve him altogether or minimize the extent of his suffering. Most recently he's had a rib subluxate and it's taken almost two months to even get a doc to acknowledge that yes, the rib IS protruding and yes, this DOES need intervention.

    Long and short of my message: having the right diagnosis is no guarantee that you'll be taken seriously. And it can be very difficult to get recognition that you're even sick at all with invisible illnesses like this.

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  13. I enjoyed that House reference. Forgive my ignorance, but is lupus the same thing as type III hypersensitivity, where Ag-Ab complexes accumulate and can activate complement proteins on host cells?

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  14. Law student daughter, age 31, was struck with unbearable lower back pain. The "doctor" at UCLA told her, "it will probably go away by itself." An orthopedic surgeon friend of the family insisted that she see a specialist. An MRI revealed a massively herniated disc with potential permanent nerve damage. Emergency surgery was successful.

    What is the motivation here, beyond (perhaps) simple stupidity? Did the MD at UCLA hesitate to refer to a specialist because there is a financial penalty for that? (Insurance is Blue Cross.) That much pain lasting for several weeks demands some kind of investigation I would think.

    Now I want to wring their necks.

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    Replies
    1. Wow. I am also curious about these dr.'s talked about...beyond being lazy, it seems as if there must be actual incentive to not try hard to treat the patient...

      Delete
  15. I have Hiadrenitis Suppurtiva and first saw a dermatologist who wouldn't even look under my armpits and areas I was having problems (I didn't know what it was at the time). Saw a few more doctors before I was finally given a diagnosis and at one point was made to feel so horrible by one PA who said I must have been wallering in MRSA to have that many boils. (My cultures show normal flora) I've read this disease is commonly misdiagnosed for years and causes a lot of patients to suffer. Thanks Doc Bastard for listening to your patients and being the awesome Doc you are! I found one here in my own hometown and I'm doing great!

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    1. Amy - I've taken care of many patients with hidradentitis. It's a terrible condition that many doctors have probably never seen. I'm glad you were able to get a diagnosis and even more glad you found someone to treat it.

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