General Question

SharonsPane's avatar

From what i've read recently, it may take as long as 15 years for many to get a correct diagnosis for a chronic problem. how can one cut through the interference from the medical and insurance conglomerates so that a proper diagnosis can be obtained in a more timely fashion?

Asked by SharonsPane (1points) February 24th, 2010

So many people go from doctor to doctor and have surgery after surgery to correct or treat a condition that, after many years of wasted time and money, they find out they don’t even have. And once the proper diagnosis is finally made, it turns out that some of the treatment given for the incorrect diagnosis actually aggravated the true condition.
ex.: arachnoiditis and lumbar punctures

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3 Answers

lucillelucillelucille's avatar

I think I have had MS for at least 6 years until my diagnosis last year.I went through alot of doctors and tests.I am involved in clinical trials and read as much as I can to keep aware of new treatments.It is a chance you take,any time you listen to a doctor.
They don’t call it a practice for nothing ;)

DarkScribe's avatar

Change your reading material.

whatthefluther's avatar

I finally obtained a diagnosis of ALS after just a a couple years of “conditions with unknown origins” but it took several people and actions to occur:
1. I was determined to push my doctors and insurance company hard and spend some of my own money for unapproved specialists and tests (some of which was ultimately reimbursed)
2. I switched to a new primary care physician who either had some influence or a loud voice.
3. My initial neurologist was good but was relocating his office so did not push hard. He did, however, have a hunch that I had a genetic neuromuscular condition since my grandmother had passed away from an unknown neuromuscular condition (tho no other family had symptoms), did several tests on my father at no cost (thanks to the doctors curiosity) and dispatched me to obtain copies of my grandmothers death certificate and medical files
4 .My primary got me assigned to a new neurologist who was outside the office but within the group, during the transition period. My new neurologist took me under his wing, demanded that he remain my assigned neurologist and he obviously also had influence or a loud voice.
4. When it became apparent my worsening condition was a neuromuscular degenerative disease I was referred to the MDA charitable organization that sponsored a review by the ALS clinic at UCLA.
5. There was a new DNA test for familial ALS that the head of the UCLA clinic recommended. My insurance company initially declined but pushes by me and my PCP and neurologists got it approved. The results were positive and my specific gene mutation was a new one to researchers, simultaneously discovered in me and a patient in Spain .
6. International researchers were excited by the discovery (my father’s family originated in Spain) and very soon I and my entire family, through first cousins, as well as the Spanish patient’s family, were being offered free DNA tests and counseling for research purposes. A doctor from Sweden had the lead on the case, but I was dealing first-hand with researchers from Harvard/Mass. General Hosp. Northwestern University, UCLA, USC and others, providing our family tree, blood for testing and copies of my medical records.
7. By permitting medical students to perform tests under the guidance of a specialist, USC did several tests on me at no cost.
So, it took several people pushing, some of my own money, a doctors hunch and curiosity, some chances and risks and probably some luck to get through the diagnosis. That might not have occurred, or would have taken much longer, if even just one element had not taken place. I guess I was lucky in that respect, tho the ultimate diagnosis was not a good one: familial ALS, at slow progression leading to paralysis and death.
See ya…..Gary/wtf

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