What would I do without this forum? Here comes my first bona fide rant, with apologies for length. Feel free to skim or skip. What I'm looking for is advice. I'm stuck on Medicaid in a major 21st century metropolis (let's call it NYC) and have a 20-year plus history of relapsing/remitting MS-like "issues" (months at a time of walking badly, vertigo, numbness, etc.) with an on and off clinical diagnosis (some say it's MS, some say it's not--nobody says it's anything else). I've lived outside the US for long periods, so my medical records are unavailable; have run through all my savings due to on/off ill health, underemployment, etc., don't have a husband or any living family except a useless teenaged daughter. Yes, of course I'm grateful for Medicaid. BUT... I can't get off the ground with treatment, because I'm only eligible for clinics, where they see you for three minutes, where I was told my MRI was "inconclusive" and that my vertigo was probably due to "disembarkment" syndrome even though I haven't been on a cruise in ten years. As to walking badly, I was given a script for PT and told I didn't need to come back. My PCP (young, sweet and clueless about how to treat me, though to her credit she suggested Baclofen for increasingly unbearable cramps), sent me for an EMG, presumably to rule out something other than MS. Because of the mix of symptoms I regularly have, I don't believe an EMG would be at all diagnostic, but agreed to do the test to placate her.
After a two-month wait, today was the big day. I asked over the phone and then again on arrival if it would be painful and was told no. A technician did some kind of nerve conduction study that wasn't painful and then told me the neurologist would come in "shortly" to do the "muscle part" of the study. I asked the technician if he thought I could ask the doctor a question about Baclofen, because my sweet young doctor doesn't know anything about it. Of course, he said. After 15 minutes in came the neurologist, looking like a mortician. No hello, no nothing. He cut straight to the chase. "Do I have your permission to insert a needle into your muscle?" Whoa! Do you mind explaining that? I asked. I said I had been told there would be no needles. "Ma'am, I was just paged," he said, starting to get up. "If you don't want me to do this, just say so." Well, could you tell me what it's for? And could I please ask you a question about Baclofen before we start? "I'm not your doctor and I don't have time to answer any questions. Do you want to proceed with this test or not?"
I was speechless. All I could say was no. The doctor left. I put my clothes back on and was out of there like a light. So much for taking half a day off from my temporary job, walking half a mile through hospital corridors and being stressed out to the max.
All I really want is a doctor who will help me get a diagnosis. I've been walking worse and worse and have begun to use a walker. I have no endurance, and the PT's I've worked with are all sure I have MS. I'm a highly qualified professional and neither elderly nor insane. But even if I were, this would be outrageous. Not one neurologist in New York will see a person on Medicaid. I can only go to clinics. Maybe I'm just not used to this. Maybe I'm just learning what it's like to be poor and lose your health in the US. Not fun, not fair, not good for your health.
After a two-month wait, today was the big day. I asked over the phone and then again on arrival if it would be painful and was told no. A technician did some kind of nerve conduction study that wasn't painful and then told me the neurologist would come in "shortly" to do the "muscle part" of the study. I asked the technician if he thought I could ask the doctor a question about Baclofen, because my sweet young doctor doesn't know anything about it. Of course, he said. After 15 minutes in came the neurologist, looking like a mortician. No hello, no nothing. He cut straight to the chase. "Do I have your permission to insert a needle into your muscle?" Whoa! Do you mind explaining that? I asked. I said I had been told there would be no needles. "Ma'am, I was just paged," he said, starting to get up. "If you don't want me to do this, just say so." Well, could you tell me what it's for? And could I please ask you a question about Baclofen before we start? "I'm not your doctor and I don't have time to answer any questions. Do you want to proceed with this test or not?"
I was speechless. All I could say was no. The doctor left. I put my clothes back on and was out of there like a light. So much for taking half a day off from my temporary job, walking half a mile through hospital corridors and being stressed out to the max.
All I really want is a doctor who will help me get a diagnosis. I've been walking worse and worse and have begun to use a walker. I have no endurance, and the PT's I've worked with are all sure I have MS. I'm a highly qualified professional and neither elderly nor insane. But even if I were, this would be outrageous. Not one neurologist in New York will see a person on Medicaid. I can only go to clinics. Maybe I'm just not used to this. Maybe I'm just learning what it's like to be poor and lose your health in the US. Not fun, not fair, not good for your health.
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