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Suggestions & Advice Needed for Medical Issues

Tuesday, February 12, 2013

I have worked in the medical field, got a degree in it as well, but I'm currently without a clue on how to proceed. I have 2 very rare conditions at baseline. I moved to Colorado about a year and a half ago and it took me a long time to establish care for my rare conditions. I also started to develop a list of new symptoms that are not related to my current conditions.

I have gone from doctor to doctor and my case is so unbelievably complicated at this point no one knows what to do and no one wants to take personal responsibility for my case. My primary care has his heart in the right place, but the system is set up where he can only keep referring me to specialists.

I'm getting sicker and sicker. I'm knowledgeable for both being a patient and working within the system, yet I'm out of answers. My last chance resort would be to go to the Mayo Clinic, but reality is, I can't afford it. I'm on my own here, completely and utterly. My roommate helps where he can with the household stuff, but he shuts down with the medical stuff. Other than that, it's me fighting this battle alone. I've always fought my battles alone, but I'm getting so sick and I've wracked my brain and have run out of options.

Tomorrow I have an appointment with my primary. I am literally going to beg him to admit me. I KNOW there is something really wrong with me and I'm pretty sure it's my endocrine system. If someone walked into the ER with only my recent symptoms & had a clean bill of health prior, they would get a full work-up. Unfortunately, these docs can't see past my other conditions. I know there are a ton of insurance legalities to get admitted & I'm not familiar with this state's rules, but it's all I can think of. They need to be stuck with me and put the puzzle pieces together. Otherwise, I'll be referred out to more specialist and I don't know how I'm going to keep going.

If anyone has any suggestions, I'd love to hear them. I need out-of-the-box ideas. There aren't any diagnostic departments I can find in Colorado. My problem with the Mayo Clinic is the money to travel there & stay in a hotel (I'm on a disability fixed income). Also, just trying to get all of my medical records requires money and me driving to all the hospitals in Colorado, plus getting all my records from Boston. I can't cook, clean, hell even showering is a problem. I've looked up advocacy groups, but they all cost money that I don't have.

I need help and I feel like I'm screaming for it and no one hears me. This (as in the new symptoms) have been beating me down for a year and a half and are becoming, quite literally, unbearable. I'd be thrilled to be back to my 2 rare conditions and that's no bed of roses.
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Member Comments About This Blog Post
    Oh dear. I am so very sorry you are going through this. I haven't read the other responses and know nothing about your conditions. However, when faced with questions that the medical profession can't answer - for what ever reason - start looking elsewhere. That's what I did. Yep, you have to be careful, there are charletons, but I know from personal experience and that of friends, that sometimes that's the ticket.

    I have had the medical profession unable to help me with pain issues, flexbility and mobility issues, allergies etc. (I know all much less significant that what you're suffering by the sounds of it) but where the "doctors" couldn't help me alternative therapies did.

    I would suggest finding a really good naturopath - someone fully trained and possibly even with traditional medical background as well.

    I had suffered for years with terrible recurring asthma and bronchitis -believe it or not - a chiropractor fixed me up. I was getting sick and figured I'd be back in the hospital within 24 hours when I went for my first appointment (40+ years ago). I never went back into the hospital other than to have my 2 kids (which I wanted to have at home with a midwife because I HATE HOSPITALS!) Ok, I simplified it a bit, but it really was that miraculous (and my medical doctor had told my mother that in his opinion I would only get worse or be hurt by going to the "quack"). About 20 years ago I had a surgeon who actually worked with chiropractors at the hospital and wow what results they had - their success rate was incredibly high and they had minimal invasive surgical procedures compared to many of the other doctors. Now, I'm not saying you need a chiropractor. I am saying, do not be afraid to explore other possibilities and talk to other people when the traditional methods are no longer helping.

    If you go to a new doctor, could you not have your history given first so that their opinion wouldn't be overshadowed by assumptions that information might cause? Just a thought.

    Lastly, get any friends together that you can to research for you - organizations that might help with costs, sponsors, whatever it takes.

    Good luck. I know how dark and alone pain and illness can cause someone to feel. Best wishes. CJ

    3090 days ago
    I guess it would depend on what conditions you're dealing with. If you don't mind sharing those, it might help with suggestions.

    The Mayo Clinic is an excellent resource. They will work with patients on financial matters. They don't work as a fee-for-service entity, at least they didn't when I went there, so the bills won't necessarily be as high as you might think. And even if they are, they have lots of assistance programs.

    Dealing with a metric crapload of my own medical issues, I truly understand. You can PM me anytime you need an ear. *hugs*
    3093 days ago
    i know about the bouncing around to different specialists all in different practices. before i joined my hmo - kaiser - i had to manage my care more closely. insurance rules, money, records to the various clinics/doctors. since being with kaiser, all that when away. all the clinics and doctors work off the same computer system, so all of them add to it and read results from it. things have been much easier when a new symptom shows up. just something to think about.
    3093 days ago
    have you called a medical school? they might be able to help or offer suggestions? or a teaching hospital... they are on the look out for "weird" to teach their interns.

    good luck .
    3093 days ago
  • no profile photo CD6565420
    I hope you find a way... I live in BRazil and really don't know how things work there. Good luck! Feel better! emoticon
    3093 days ago
    As for medical records - many times if the doctor requests them from a doctor, there are no fees associated with it. So, if you get to a new doctor and they need your previous records, you can fill out a HIPPA release and your new doctor can make the request directly from your old doctor. This could also alleviate a lot of the driving around.

    But if you've worked in the medical field you know that. Hrmmmm....
    3093 days ago

    Comment edited on: 2/12/2013 11:27:12 AM
    Is it an arthritis issue? I have a rare disease that causes arthritis. I couldn't get help in my small town far, far away in Alaska. I ended up at the Denver Arthritis Clinic. They are fabulous. I can wholeheartedly recommend my doctor. The have an x-ray facility and a laboratory within their building so you don't get bounced around for those tests. I'm not sure what financial assistance they offer as I have always been very lucky to have insurance.
    3093 days ago
    Mayo has many programs that can help with the medical cost. Check them out and get better. You cannot put a price tag on your health.
    3093 days ago
  • no profile photo CD12459382
    emoticon I'm so sorry that you are suffering so much. I wish I could offer you advice... but I'm in Europe and I have no clear idea of what the possibilities are in your country. I really hope others can offer you good ideas.
    3093 days ago
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