[QUOTE=alice md;725917]Diagnosing someone with MG is not that hard. Why doctors make it hard is beyond me.
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I think the problem lies in the fact that they are not able to differentiate between-diagnosing a clinical myasthenic picture (which is fairly easy and in most patients, even those that have a less typical course, quite clear to the extent that a first year medical student can recognize it) and verifying autoimmune MG.
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Alice, is a "clinical myasthenic picture" what a doctor "sees" based on symptoms and/or exam? I'm guessing the verifying of autoimmune MG is where the blood tests come in. In other words they want proof. I'm a very analytical person and I've thought a lot about this. It seems as though there are probably yet to be discovered antibodies out there. In my mind it makes so much sense, but in their minds it seems to be hard to grasp. Not all of them, of course, but more than there should be.
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And then they start confusing everything, questioning what they clearly see, questioning their patient's reliability etc.
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I think, for them, it's easy to question their patients reliability when they don't have evidence of disease. I also think it's easier for them to do this when they don't have an established relationship with the patient. The trouble is, so many of them make it nearly impossible to develop a relationship with the patient because of the way they treat them.
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when my tests came back normal, he consulted an expert. even this expert agreed that I have at least ocular MG. ( I didn't know then that it is acceptable to have normal tests in ocular, but not so in generalized).
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This is interesting. I wonder why it is more acceptable to have normal tests in ocular MG? Is it because certain eye problems (ptosis, eye muscle weakness) are usually only seen in MG? I remember my Ophthalmologist telling me that I could still have MG even though the blood tests came back negative.
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but, when I started having more significant generalized symptoms, including episodes of shortness of breath (one which prompted hospital admission by this resident), it became obvious that I could not possibly have MG.
the expert came to the hospital (after the resident gave orders for plasmapheresis and steroids to be started that evening), told them to stop all treatment (including mestinon) and when I had some improvement with bed-rest, he concluded that I have "nothing", can continue taking mestinon as placebo (if I wish to do so) and discharged me home.
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How frustrating that must have been for you! I recently read somewhere else (besides here) that most illnesses are either diagnosed by a very experienced doctor or one that has very little experience.
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every abnormal test that I had, was attributed to deconditioning, anxiety, or what ever explanation you could think of.
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Ugh! Why do they do this? It seems that as a med student you would have been taken even more seriously. Obviously, that wasn't the case.
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so, paradoxically, as my symptoms became much more severe and more clearly evident, it made them question the diagnosis, instead of the exact opposite.
and why? because in their opinion it was "impossible" to have such severe symptoms with normal ancillary tests.
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This is just heartbreaking to me! I mean, does a patient have to be in a crises before they are diagnosed? It seems like such a dangerous and even life threatening situation to be in.
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"...You have continued to have symptoms and perhaps the most striking element is the recurring episodes of profound weakness with breathing difficulties. However, I was encouraged by the fact that in the fortnight before we met you felt that there had been some improvement.
On clinical examination I was not convinced of the presence of any specific weakness. Your eye movements were normal and the eyelids did not show fatiguability. (to this a good friend of mine, who is a neurologist, asked if he himself had bilateral ptosis or was he blind?)
The neurophysiological studies were essentially within normal limits. There was one very minor abnormality on single fibre studies but that is non-specific and certainly the electrical test did not show the changes that we would normally expect to see in somebody with substantial myasthenic weakness.
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Wow! Just Wow! Does this particular doctor know that you were eventually diagnosed with MG?
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I promise you, this is real. I just did "copy and paste" from his original letter.
he also wrote an e-mail to my GP at the same time, suggesting that "all involved will be positive" and explaining that it would be advisable for me to receive "emotional support", as many patients with MG will continue to have such "symptoms" even when their illness is fully under control ( such as mine obviously was).
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It sure sounds as if this doctor didn't know much about MG. It seems as though he was implying that if you had any symptoms at all while being treated that they must have been purely psychological. That's just bull!! Its as though a patient can't escape the "emotional problem" angle even after a diagnosis is made. Let's blame the victim!
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I can promise you that if my EMG did show "the changes they would normally expect to see in somebody with substantial myasthenic weakness", the approach would have been completely different. quite likely, I would have been admitted to the ICU with the (correct) diagnosis of myasthenic crisis. [B]what other name would you give a situation in which someone has recurring and almost continuous episodes of profound weakness with breathing difficulties,[/B] unmeasurable vital capacity, requiring respiratory support, and on examination does not have any "specific weakness" because she can hardly move and has shortness of breath (anxiety?) just being examined briefly? and has to use her respirator in the middle of the electrophysiological examination, that "did not show the changes we would normally expect to see"?
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It reminds me of the saying "If it walks like a duck and talks like a duck then it must be a duck." You just want to say to them "I'm so sorry that my body cannot produce the test results that you want!"
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I think and hope that this is now starting to change, as there is a gradual better understanding of the complexity of this illness, and the limitations of the currently used diagnostic tests, even among the neurology community.
And I am doing what ever I can to facilitate this change.
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I hope things continue to change (and in a hurry
). It sounds as though you are doing what you can to move this along. Thanks from all of us out here who have ever been doubted and so desperately need help.
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I think that patients should be aware, that at least some neurologists will not treat them seriously regardless of the severity of their symptoms, once they have normal test results, and they have to seek someone else, who does understand the limitations of those tests.
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This is what I spoke about in my other thread and this is what I did. I knew I was so very sick and that something wasn't right. I was so desperate for answers. I really feel as if I was screaming to be heard! And every time I had a bad encounter with a doctor a little piece of me felt beaten down. It's so hard to advocate for yourself when you are so sick.
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should such patients be treated with immunomodulatory treatment with all its possible side-effects is a harder question, because some of them may have a genetic abnormality and not an autoimmune disease, and I do hope that within the next few years, the developments in the field of genetic testing will make it possible to screen such patients for possible mutations effecting the NMJ and down-stream related proteins.
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You brought up a very important point. I have wondered the same thing. It seems as though many neuros will prescribe the Mestinon to those with negative tests, but they will not go further than that. Could it be that in the cases where testing is normal that perhaps the immunomodulatory meds wouldn't help anyway? Could there be more than one form of both autoimmune and genetic MG? By the way, I always had a strong interest in medicine and I know I missed my calling. I was given up for adoption and have since met my birth parents. My birth father is a retired physician as were several other family members.
Alice, it took me a while to reply to your post in part because it moved me so much and it made me think. I certainly feel less alone and more understood while on this journey.
Thank you so very much for taking the time to share such a personal story.
