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Thread: Folks with MS (or possible MS)...a bit of a rant

  1. #21
    Quote Originally Posted by wheels4one View Post
    Danine,
    MS for almost 28 years for me. Not on any meds right now but finished 13 months of IV Steroids last year. I'm not sure what the future will bring but I'm not giving in.
    It's good that you've been able to manage this long and keep working! That gives me hope. Wow, 13 months on IV steroids.....I wonder why your doc's didn't try the other disease modifying drugs instead.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  2. #22
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    Quote Originally Posted by woman from Europe View Post
    No , I don't, the neurologist said no all the times even if I didn't take the lumbar puncture. For them SCI is a stable injury, it never changes so if it changes and you loose function, they still believe you have another neurologic desease. So they tried to find out that I had MS because that was the solution they wanted. But they did not find any signs even if they tried hard. You know that story.

    Last year I had an appointment on Rikshospitalet, one neurologist looked at my MR, said he was going to discuss it with the other neurolgist and neurosergeons because he understood something was wrong and I have not heard a word after
    If this is a thing that concerns you, why not claim them for lack of duty? There was a situation you claimed here on CC a while back for example you was not happy with a nurse, -hows that story going?

  3. #23
    Why not google it? That was for a uvi and in another hospital, Lovisenberg

    I sent the letter but it was the wrong place, pasientombudet can't do a thing, you have to complain to fylkeslegen.
    TH 12, 43 years post

  4. #24
    Leif, stop drinking and let this thread stay on topic.

    Please?
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  5. #25
    It is very difficult when you start adding other medical probs to the SCI.

    As you know, I have Graves disease. I ignored the blurry vision, lost weight, thinning hair, a panic attack that made me leave a movie 10 minutes in, utilities being constantly turned off as I couldn't focus to remember to pay them. The symptoms I ignored is insane. Only when I was scheduled to speak on the Capitol lawn and barely made it due to hugely swollen legs did I pay attention. That night I passed a kidney stone. I assumed those things were related.

    I was invited to speak at Rally for the Cure in NYC a few weeks later. Bought my airplane ticket, was so flattered and excited. Went shopping, as I couldn't fill out my bras or fit in my shoes. Was sitting in a fitting room in Vicky's Secret. What I saw in the mirror made me burst into tears. I was just skeletal with these enormous ankles and feet. And there wasn't a bra on earth to life my chest, b/c my chest was GONE. There were also no shoes. Not even bedroom slippers would go on my feet! I had to cancel my trip, to let Wise and Patricia and u2fp down, and to eat the price of my airline ticket.

    I wound up in the ER, afraid I had blood clots. They thought it was just from being "wheelchair-bound", but tested for blood clots to cover themselves. Doppler testing said no clots. My reg doc said it was from being in the wheelchair. I said "I've been in it for YEARS. This is NOT NORMAL." So he called it cellulitis. By the end of that little cellulitus carousel, I'd had 6 different antibiotics. The night I had to wake my husband up to tell him I'd shit the bed was the end of that. All told, I guess I had 20 or 25 trips to the doctor/ER before they ran a simple full chemistry panel on me, rather than their cheapo 6-test mini-panel. $50 worth of thyroid tests was all it took to diagnose me.

    I firmly believe I went thru all that because they couldn't see past the chair. Why test the thyroid, which they would do as standard care on an AB woman that had been in 4 times in 2 weeks? If I had been AB and that sick, they would have admitted me to the hospital weeks before.

    I've had it happen other times too. This was just the one that nearly killed me.

    It's too bad it is this way, but we have to advocate for ourselves medically. It's so hard to do when you're sick, but if you don't you'll get sicker.

  6. #26
    Quote Originally Posted by betheny View Post
    I firmly believe I went thru all that because they couldn't see past the chair...It's too bad it is this way, but we have to advocate for ourselves medically. It's so hard to do when you're sick, but if you don't you'll get sicker.
    I agree. It's a shame...if doctors get puzzled over something, they imply that the problem doesn't really exist or that it's because of something that's beyond their area of expertise. Then you get bounced around from doctor to doctor, each saying that it's something that some other type of doctor needs to treat!
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  7. #27
    Stopp Leif, du kommer til å få fyllenerver i morra. Og stopp og legg ut ABBA på alle trådene. God natt
    TH 12, 43 years post

  8. #28
    Senior Member skippy13's Avatar
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    Quote Originally Posted by Danine View Post
    I agree. It's a shame...if doctors get puzzled over something, they imply that the problem doesn't really exist or that it's because of something that's beyond their area of expertise. Then you get bounced around from doctor to doctor, each saying that it's something that some other type of doctor needs to treat!

    My problem has been that if a doctor puts in your record that there is a possibility of MS in your file, they do not look any further for answers. My town is so small that we dont have much choice of physicians. A fresh look at your problems by another physician is not going to happen because there is a health care monopoly in place. They will back each other to hell and back because they are all part of the same medical/insurance organization. The insurance will also not pay out of area consults so you are trapped.

  9. #29
    Quote Originally Posted by skippy13 View Post
    My problem has been that if a doctor puts in your record that there is a possibility of MS in your file, they do not look any further for answers. My town is so small that we dont have much choice of physicians. A fresh look at your problems by another physician is not going to happen because there is a health care monopoly in place. They will back each other to hell and back because they are all part of the same medical/insurance organization. The insurance will also not pay out of area consults so you are trapped.
    That sounds like a bad situation, but similar things happen in larger cities too. When I was trying to "fire" my old neurologist (who was an arrogant, incompetent, arse) my PCP warned me that there were very few competent neurologists in town. I fired him anyway and I think I have a decent one now. That piece of paper they get because their rich mommies and daddies were able to pay for their medical school education certainly doesn't make them competent physicians. I won't even let myself get started on insurance companies.
    Last edited by Danine; 11-29-2008 at 01:46 AM.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  10. #30
    Danine,
    I was on Betaseron for 9 years. I started having more bad side effects than I should so my neuro took me off it 2 years ago when I had to go to the hospital. I had a UTI and it triggered a relaspe.
    We had talked about Solumedrol since I did well with it. I started it in the hospital then every month for a year. So far I have not had any MS problems as of January 2007.

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