Is it better to be diagnosed or not??

Discussion in 'Fibromyalgia Main Forum' started by Musica, Nov 26, 2005.

  1. Musica

    Musica New Member

    I was looking into long term insurance recently. I figure it will be too expensive anyway, because I already have RA (although controlled), severe osteoporosis (taking calcium, vit D and Fosamax) and severe sleep apnea (on CPAP).

    An agent who gets quotes from several insurance companies says none will give me a quote as long as I have "unexplained pain". This is what rheumy has said for months, maybe a year, in his chart notes. Only a couple of mentions of possible FM. Chart notes even say no tender points, except a couple of visits ago when I was obviously so sensitive that he didn't mention tender points one way or the other!

    Do you think it is better to have the diagnosis and face whatever consequences there are for health or long term insurance? Or is it better not to have the dx yet, which many rheumies seem to try to put off as long as possible? I'm not sure if they sometimes delay a diagnosis for the patient's sake or to give more credence to the diagnosis later on. Do I push for a diagnosis?

    Within the last year, I've been through a total body bone scan, head/cervical MRI, low back/hip MRI, and even had a hysterectomy recently as my fibroid uterus was so unusually large that rheumy was wondering if it could have caused global aching. And I had a neuro eval, too. I think we're running out of options. Do I let it play its course, if rheumy wants to wait a bit longer to see about the effects from the fibroid, or do I push a little for an answer? When I was so uncomfortable a couple of visits ago, he said he thinks I could possibly have FM. But it seems like he never mentions it twice in a row, and I have never pressed him on it. I think we have had it in our respective minds for a year, and I am sure rheumy knows it has been on mine, but somehow I hem and haw whenever I actually try to ask a question about FM! I feel like he would think I am asking for that dx or subconsciously making tender points tender, you know? But it is sounding like it may be to my advantage to know, at least as far as long term insurance. And just for me to know, after all this time! I don't usually have so many obvious TP's that he can't help but diagnose, so it leaves me in that wonderful gray area...


  2. alaska3355

    alaska3355 New Member

    bumping for Musica
  3. cerise

    cerise New Member

    If you go for a quote right now, that will give you an idea of what the insurance companies will or will not cover and how much your premimum will be.

    If you have any kind of medical history problems that is going to affect your premimum and whether you're going to get coverage, regardless of a diagnosis.

    The fact that you are already running up medical bills is going to impact the insurance companies as they don't want to pay out money!

    As far as a diagnosis goes, how can you treat the problem without one?

    How are you covering your medical bills now?

    As to the fibroid, monitor it! All the pain and problems I had was being blamed on the fibroid tumors. Then I had them removed and guess what, still had the problems. Had to have the fibroids removed as they were huge, but monitored them for a year. Don't let them blame the fibroids for what is IBS!

    The longer you go down this road of medical treatment the harder it will be to get insurance coverage. The insurance companies will probably inquire as to a long term diagnosis whether or not you have received one.

    Important to find out what your insurance policy will cover, regardless of a diagnosis.
  4. Musica

    Musica New Member

    Thanks for the comments and suggestions, Cerise.

    The agent didn't even think the insurance companies would give a quote without knowing all the diagnoses. I have medical insurance for the med bills, but this is for long term disability. They aren't as concerned about med bills as much as the likelihood of disability. I don't know how disability companies feel about FM these days.

    I presume rheumy will eventually get to a FM diagnosis, but has been waiting to rule out everything else. Since I already had a sleep study and am on a CPAP, and am already on tramadol, is there much more he could do? Boy, that is probably a very ignorant question!

    I've known the fibroids were large since 1999, but rheumy, then GP, strongly encouraged me to take care of them. So I did, and had a hysterectomy in October. Even GYN was commenting on how big the fibroid was (especially since I'm not very large). I don't think it has taken care of anything except the fibroid uterus and some additional weight and inches because of it, except some bladder pressure. It was still good to get rid of it, and rheumy can't have that in mind any longer as a possible reason for the global aching.

    Has anyone gotten individual disability coverage with a FM diagnosis, and was it very difficult/expensive?

  5. Musica

    Musica New Member

    Anyone here with experience with long term disability insurance?