Feb 5, 2011

Test Results...

For you wonderful folks who follow this blog, I'm sorry to have left you hanging on the outcome of my last doctor's appointment. The results are in and....

-drum roll-

*MRI was negative for demyelination = not MS.

I know I should be over the moon that I don't have MS, (and believe me, I really am happy not to have it), but that leaves me with No Diagnosis.

Or worse, the non-diagnosis of Fibromylagia - (which apparently means I am a bat-shit crazy with a personality disorder)

I couldn't write about this for a few days, because I mostly feel defeated. I feel ashamed of being sick with no objective indication of illness. I feel dismissed.

I don't know where to turn next. Do I just give up? Is this the way life is going to be forever?

Thanks to God for my wonderful husband (who loves me no matter how I wake up feeling each day), for my friends (who stick by me even when I cancel plans with great frequency), and for my mom (who checks in on me everyday hoping for good news...and buys me groceries when I am too ill to leave the house). I don't know how I would have survived the past few years without you all to count on.

* Actually, the reason the doctor didn't want to share the report in advance of our meeting was due to what she calls an 'incidental finding' of my cerebellar tonsils (WTF??) being 4mm longer than they should be. Apparently this is not something I should worry about. Who knew there were tonsils in the brain?


  1. Glad you don't have MS but sorry they still can't find a way to get you feeling better :-(

    Hang in there!

  2. Tonsils in the brain? Okay, that's a new one.
    So very happy you don't have to contend with MS. Now to find the real dx.

    Fibromyalgia means that the doctor didn't want to take the time to figure out what's wrong. Have you read anything about the spondyloarthropathies? It's not uncommon for people to have a fibro dx for 4 years before someone figures out that it's really a spondy issue.

  3. I wouldn't accept a fibro dx without a lot more testing.

    I read that post too and commented. The thing that medical people don't realize is they are wrong in their belief that their derision is directed only at those who deserve it.

    I've been treated like a crack ho with acute asthma. The stories on blogs highlighting docs & nurses vs. crazy patients mirror my experience.

    But I'm not crazy or a ho or addicted to drugs.

    How do I know I'm not a crazy patient?

    Simple. By the time I'm in the ER, I'm too sick to talk.

    Ack. Can't finish my comment, toddler is crying. Gotta go. I'll try to come back later.


  4. Okay, I'm back. That was faster than I thought. Just a pre-sleep meltdown that required a quick re-tucking into bed.

    So I keep seeing all this caustic derision in what medical professionals really think in their blogs and the big take home for me is they aren't containing it nearly as well as they think.

    The problem isn't really the annoying patients with the 'faux' diagnoses, it's the compassion burnout.


  5. Penelope, I am so pleased that it was a clear MRI! Hooray for no MS!

  6. I don't want to take away from the good news, but I can't help but contribute to the debate. I find this offensive: "Fibromyalgia means that the doctor didn't want to take the time to figure out what's wrong."

    As frustrating as it is for patients whose symptoms remain label-less, or for as hard as they've had to fight to be taken seriously, there are also plenty of healthcare professionals out there doing a good job.

    Fibromyalgia is a diagnosis of exclusion. Thorough histories, physicals, blood tests, and sometimes imaging tests must all be normal before this condition is even entertained on the differential diagnosis.

    Don't you think WE GET FRUSTRATED TOO when no question, physical finding, or test reveals abnormality? While I don't want to find MS, I would love to make the crack diagnosis that facilitates treatment of a patients problems. Even a-hole doctors still want to be seen as smart (and right)! Also, they don't want to get sued for missing something!

    I LOVE diagnosing hypothyroidism because the treatment is simple and it is amazing how great a patient's life can be once this is found and treated. When patients come in with fatigue, I have my fingers crossed that it is anemia or hypothyroidism, because they are easy for the patient to manage, totally fixable, etc.

    Unfortunately, there are a lot of times where the picture is less clear, the fatigue is not caused by anything detected on a blood test. But it's ok. I can still help someone with fatigue even though I don't think it is coming from cancer, anemia, whatever. Do I have to call it "chronic fatigue syndrome"? Well, maybe, to give the patient and I something to call the symptoms by. I could just call it "fatigue, NYD (not yet diagnosed)" but medico-legally that usually means there is more workup to be done. We run out of tests at some point!

    Truthfully, our job is to find the common & easily treatable, and to rule out the big scary stuff. It is more often than not that we get stuck in the ether. Sometimes it is easy "well, I can't entirely explain your chest pain, but we have ruled out heart trouble and lung problems with our tests. The way you told me it feels, when it bothers you, and the fact that the antacid/medication didn't help make me think it doesn't fit with a GI cause. It could be musculoskeletal, I can't rule that out. We will treat it symptomatically and watch for red-flags." Most patients can (and do) live with some symptoms once they are reassured that it is not the heart attack they thought it was.

    Labels can help patients and doctors cope with the frustration of not having an easy diagnosis. Dr D (askanMD) has a good post about this - he and a patient made up a fake name for her troubles so at least they could be united against it.

  7. Accepting uncertainty is soooo hard for people who are trained to be critical thinking and decisive, but it's a huge part of being a GP. Many patients are bad at accepting uncertainty too.

    I know patients, and you (Penelope), want answers: anyone would! I don't know your case but maybe you will be given the label of a functional somatic disorder (such as fibromyalgia). Could they be missing something else? Possibly. Have they ruled out the really commons and the big scaries? Well at least MS is off the table, not sure what other tests you've had but probably quite a few if you wound up with an MRI in the end.

    I'll try and put myself in the patient's shoes more often, and it might be a useful exercise for Pissed off Patient to imagine what it is like to be the doctor in the diagnosing chair. I think we are actually fighting on the same team!

    We may pretend we have all the answers, and we sure don't. But it's ok. Right?

    /end ramble
    phew, sorry!

  8. No need to be sorry, I appreciate you weighing in with your counter-point. Its good to hear what the experience of having an undiagnosed patient is like from your chair.

    I'm sure that you are a kind and compassionate physician. It sounds like you will do all you can to support your patients when they go through difficult times of uncertainty and the frustration that comes with the lack of diagnosis.

    I think the part you may not see is that there are many, many physicians who do not share your commitment to patient care and who stereotype and shame patients. (Did you have a look at Serenity Now's post about Fibromyalgia? Judging from the number of responses from like-minded physicians, hatred and irritation towards patients with the label of FMS is wide-spread.)

    I can tell you that the first internal medicine specialist I consulted never looked at my thyroid levels (wouldn't that be an obvious place to start?). She interviewed me and told me my fatigue was depression-based and there was nothing she could do to help me. She left me sitting crying in her exam room and said that my tears (of frustration) only solidified her diagnosis. I have to agree with Pissed Off Patient's critique in that case that she didn't want to take the time to find out what was wrong. Her mind was made up the second she saw antidepressants on my medication list.

    After that train-wreck of an appointment, I joined a private, concierge clinic to get a second opinion. They found my TSH was high and my ferritin was down to 8. By taking thyroid medication & iron supplements my life changed dramatically! (I can see why you like those cases) I was able to register for my PhD program and attend school full-time. I seriously owe the concierge physician a debt of gratitude for getting me back into life.

    Because I have a high ANA and a serious case of brain fog (terrible word finding), I was sent to another specialist. I really like her, we talked about what I might have and she told me that she wasn't sold on Fibromyalgia as a clinical entity. After my appointment, she sent a follow up letter to my PCP diagnosing me with Fibromyalgia! I understand the need to name something, but it felt like a slap in the face to find that she had 'diagnosed' me with a disease the even she doesn't believe is real.

    I guess what I'm trying to say is that there are physicians who care, and there are physicians who laugh at these symptoms and don't hesitate to call us 'bat shit crazy'.

    I feel there is an underlying judgement placed on people thought to have a "functional somatic disorder" - that they have caused their problem themselves. Or that their symptoms aren't 'real'.

    I think that physicians like you ARE on the same team as your patients. But I would also say that not all physicians are like you.

    You make a good point that it is easy to focus on the negative and I agree that there are many healthcare professionals doing a great job. I know that the work can be thankless and I will personally make a greater effort to acknowledge my appreciation for the physicians who have been supportive throughout this journey.

    OK...end of my response. hope you can tease through all that to see where I'm coming from too!

  9. It is easy to focus on the negative when all you do is run into bad behavior. I have been verbally abused had clear medical history ignored etc... Go read my blog. I'm not crazy, medicine is.

    The last physician I worked with who had their sh*t together was in 2006 when I did IVF to get pregnant. Even then, they were the 6th Reproductive Endo I'd seen.

    I'm sure doctors get frustrated too but they also have all the power. The patients have none--even voting with their feet is a barrier to good medical care so even that works against them.

    Personally, I think there should be laws requiring physicians to cc patients on all notes and correspondence. There should not be anything held confidential from the patient unless there is a POA in place or guardian, in which case they should receive information on the patient's behalf.

    Transparency would go a long way to improving things and cleaning ups some of the more egregious practices that are barriers to health care (i.e. diagnosing in notes or other correspondence without disclosing to patient).


  10. Also, I'm not necessarily convinced that fibromyalgia isn't real. It's just not a diagnosis I want to deal with given the skepticism from physicians.

    Thanks to steroids I have trigger points all over my body, permanent dysfunction that would easily allow me to be herded into fibro.

    In fact, I have a referral to go see a rheumy which I'm ignoring until the adrenals are fully tested.


  11. the pendulum swings, eh?

    Although I defended the theoretical physician, I agree, some of them are bad. I am probably a bad one at times too.

    Interestingly brain fog is not a feature of fibromyalgia that I know of . Word-finding difficulty can signify big brain stuff so I'm extra glad that your MRI was all good :)

    I may become a jaded/grumpy/non-caring GP one of these years; being just at the end of my training I have the benefit of still being excited by the job and also probably a lot more 'compassionate communication' training.

    I've also been on the other side (as a scared patient) recently, and I did have to work very hard to be a 'good' patient. It can be difficult to trust (especially if you've learned to do things a different way, or have any other reason to challenge a suggestion).

    I disagree that we hold all the power but that's a rant for another day. Regardless, it is more than fair for patients to expect a certain degree of professionalism, expertise, and empathy from a doctor.

    I'm certainly no expert, but I would struggle to respect a doctor that doesn't even try to listen and doesn't even consider more than one diagnosis on the differential.

    Regarding that specific referral: In a patient presenting with mainly fatigue, one cannot easily label them with depression off the bat. Even the DSM-IV reminds us that all psych diagnoses can only be made if "major medical conditions" are excluded. Occasionally I label a person with Major Depressive Episode (which may go on to be "Depression") right off the bat, but it is usually them who tells me "I am depressed. I've been reading about it, and I think I'm depressed because ____"

    I'm getting bogged down in details. Could go on and on about documentation/correspondence, symptoms in the spectrum of normal, treating the patient not the disease, etc.

    I hope there are answers, and if not, then that there is support and compassion in your futures.

  12. Well if I have any power, I've failed to figure out how to use it.

    Seems all too easy for the doctors to kill me, what with unilaterally deciding I don't have asthma (one doc did so after I'd just been released from the hospital for asthma) and ignoring my previous history of cortisol levels of 1.9.

    (I really encourage any docs reading to go through my blog.)

    Aren't medical mistakes now the third leading cause of deaths in the US, after cancer and heart disease? This fact was mentioned in a book I'm reading on medicine. If it's accurate, wow.

    When I can give a physician my blood work showing low cortisol history and they still refuse to test, I fail to understand how that works. It's negligence and medicine is too blind to see that.

    So much for patient power.

    Also Penelope, I am glad your scan was clear, but I know it also sucks because you still have a problem without a solution or a name.


  13. Hey Penelope, inspired by this conversation, I have done a post on my patient power today that anyone reading here may find of interest.



  14. Hey Penelope, I read this article in the NYT this AM, and thought of you re the "SCT" diagnosis at the end.


    Any thoughts on this? Sounds better than fibromyalgia at any rate....

  15. Hey OMDG,
    Thanks for keeping me in mind when you came across this article! I've looked into it today, and I'm not sure its a fit. (well, 'sluggish' is a fit).

    As SCT is related to ADHD (which my husband actually has), it looks like the symptoms need to have been present since childhood in order to meet diagnostic criteria....my brain fog onset came about four years ago.

    One thing I do wonder about is the CT scan I did a few years ago that said, "Frontal lobe atrophy unexpected for age". I was told that this was not a relevant finding and to ignore it, but it does seem from the reading I've done on SCT that the frontal lobe is responsible for executive function.

    And yes...just about anything is better than fibromyalgia.

  16. Oh my goodness, there's so much I want to say (and rant about) here, but there's no way I can get it all written.

    Most importantly, I'm so happy to "meet" you, Penelope, and so happy that you stopped past my blog!!

    I'm sad to see that Serenity Now Hospital post. I don't read them regularly, but I've been reading on and off for awhile and enjoyed their sense(s) of humor. But just like I gave up reading a certain ER nurse's blog when it sunk in how judgemental and nasty she was about people who were suffering, I guess I'll have to stop reading these guys, too. And that makes me a little sad, but even though I know there are people who truly are drug addicts looking for meds, I think the vast majority of people out there who show up in the ER (or the doctor's office) truly are suffering.

    I fought the fibromyalgia diagnosis for ages, with the support of my PCP, who would consistently point out to the specialists that I have a a bunch of abnormal labs and tests that are inconsistent for fibromyalgia. But lately I'm feeling apathetic and, yes, depressed (and who wouldn't be depressed with physical symptoms that make it impossible to live their life the way they wanted to??) and I'm in a phase where I just want to give up the search for a diagnosis and treatment plan.

    One anecdote that I can't resist sharing: My last visit to my rheumy, he had switched over to electronic medical records and decided to dictate into his little recorder in front of me. I was shocked to hear him state that I had no joint tenderness. Seriously? Just because I didn't scream out in pain? I know I was wincing (I'm not even a little bit stoic), and then was rubbing my hands and wrists after he stopped pushing on the joints. He had NEVER asked if it hurt while he was doing the exam, and he always has so many residents and med students in the room who are usually talking at the same time, that I barely get a chance to express my symptoms. I've been seeing him for 2.5 years, and all along he's been charting that I have no joint tenderness. Sigh. Not that it probably makes a huge difference in my search for a diagnosis, but how many other things has he discounted without asking me about??


    Anyway, I need to go read farther back in your blog, but couldn't resist sharing my 2 cents ...

  17. @DrOtte
    I find this offensive: "Fibromyalgia means that the doctor didn't want to take the time to figure out what's wrong."

    No offense was intended. I know people who were wrongly diagnosed with fibro who really had other serious health problems. One of those people nearly died because the fibro dx made doctors discount everything she said; when she went to the emergency room having a heart attack, they sent her home with a dx of "anxiety attack."

    Fibromyalgia is a diagnosis of exclusion. Thorough histories, physicals, blood tests, and sometimes imaging tests must all be normal before this condition is even entertained on the differential diagnosis.

    If this is how doctors are being trained now, that's great. That's what the literature says should happen, but IRL (around here) it takes too much time and effort. It gives me hope to hear that doctors of the future might expend the energy needed to figure out the real diagnosis when the patient's problems aren't easily solved.

  18. They're on a machine designed to relax for hours. Some ferries have little casinos, Hangover depression