4 ms·

It's orthogonal to the linked story, but I attended a dinner the other night where the presentation was on advances in MS research. The speaker, an MS research

It's orthogonal to the linked story, but I attended a dinner the other night where the presentation was on advances in MS research. The speaker, an MS researcher and clinician, noted among other things that we've been really really wrong about how many folks in the US have multiple sclerosis - like, by a factor of 2. There are lots of reasons for this, but it's not JUST the lack of easy diagnostic tests. Until relatively recently, there were NO real therapies for MS, so doctors were hesitant to make the pronouncement. Add to this that a diagnosis of MS would qualify as a pre-existing condition, and would prevent the patient from getting health insurance (pre-Obamacare, anyway), and would absolutely put the kibosh on life insurance. So there were real world consequences, and they were therefore hesitant.

joshgel 7y ago
I think part of it, but also not the entire story. Take cancer, for example. The treatment is so toxic (potentially deadly) that we want to make sure that our diagnosis is as close to 100% as possible. To the point where if you want to transfer where you get your chemotherapy, the new place will insist that you bring not just the biopsy report that shows that you have cancer, but the actual 'slides', the actual biopsy tissue for them to independently evaluate. Contrast this with MS where there is virtually no therapy (until recently), the tests themselves are very expensive (multiple MRIs over time) and the tests aren't even that much better than just talking to the patient and examining them. But, both the MRIs and the clinical exams/interviews require multiple visits, sometimes with years of monitoring in between to truly make the diagnosis. The system just doesn't incent this type of care and certainly doesn't reimburse it very well. Patients want answers and answers now. Doctors are hurried. Insurances change so you have to change networks, etc, etc, etc.
- fao_ 7y ago
  > The treatment is so toxic (potentially deadly) that we want to make sure that our diagnosis is as close to 100% as possible. I think you're ignoring how obscure some symptoms of cancer are, though. My cousin went back and forth with the doctor about a recurring cough, for 3 or 4 years. It turned out to be bowel cancer, and while they did treat it, it was too late by the time anyone in the medical system thought of that. The only indication that would point them towards bowel cancer, was the medical history of her family, her grandmother had it too. She was rather young as well, late 20s/early 30s, so they just didn't consider it.
- refurb 7y ago
  Contrast this with MS where there is virtually no therapy (until recently) There have been approved therapies for MS since the mid-90s.
y-c-o-m-b 7y ago
This is still the case. I've had ongoing neurological and digestive problems for years now, and each primary physician or neurologist I see has been hesitant to run tests let alone attempt to diagnose what's going on. So they labeled it as "stress" which made me feel like I was crazy for a very long time. Paradoxically this caused me a great deal of stress. I ended up seeing two different mental health specialists - one with experience in somatic disorders - that concluded (after months of therapy) it's not a psychological problem. There's so many experiences reported in MS and other neuro-based communities online where people were given the stress and anxiety label only to be diagnosed months, years, and sometimes decades later with an actual illness like MS. I feel truly bad for people that have the extraordinarily rare diseases because chances are slim they'll find someone to actually investigate beyond the standard textbook procedures.

joshgel 7y ago

I think part of it, but also not the entire story. Take cancer, for example. The treatment is so toxic (potentially deadly) that we want to make sure that our diagnosis is as close to 100% as possible. To the point where if you want to transfer where you get your chemotherapy, the new place will insist that you bring not just the biopsy report that shows that you have cancer, but the actual 'slides', the actual biopsy tissue for them to independently evaluate. Contrast this with MS where there is virtually no therapy (until recently), the tests themselves are very expensive (multiple MRIs over time) and the tests aren't even that much better than just talking to the patient and examining them. But, both the MRIs and the clinical exams/interviews require multiple visits, sometimes with years of monitoring in between to truly make the diagnosis. The system just doesn't incent this type of care and certainly doesn't reimburse it very well. Patients want answers and answers now. Doctors are hurried. Insurances change so you have to change networks, etc, etc, etc.

fao_ 7y ago
> The treatment is so toxic (potentially deadly) that we want to make sure that our diagnosis is as close to 100% as possible. I think you're ignoring how obscure some symptoms of cancer are, though. My cousin went back and forth with the doctor about a recurring cough, for 3 or 4 years. It turned out to be bowel cancer, and while they did treat it, it was too late by the time anyone in the medical system thought of that. The only indication that would point them towards bowel cancer, was the medical history of her family, her grandmother had it too. She was rather young as well, late 20s/early 30s, so they just didn't consider it.
refurb 7y ago
Contrast this with MS where there is virtually no therapy (until recently) There have been approved therapies for MS since the mid-90s.

y-c-o-m-b 7y ago

This is still the case. I've had ongoing neurological and digestive problems for years now, and each primary physician or neurologist I see has been hesitant to run tests let alone attempt to diagnose what's going on. So they labeled it as "stress" which made me feel like I was crazy for a very long time. Paradoxically this caused me a great deal of stress. I ended up seeing two different mental health specialists - one with experience in somatic disorders - that concluded (after months of therapy) it's not a psychological problem. There's so many experiences reported in MS and other neuro-based communities online where people were given the stress and anxiety label only to be diagnosed months, years, and sometimes decades later with an actual illness like MS. I feel truly bad for people that have the extraordinarily rare diseases because chances are slim they'll find someone to actually investigate beyond the standard textbook procedures.