Well just got bad news about my cond.

Discussion in 'Fibromyalgia Main Forum' started by JonP06, Sep 19, 2005.

  1. JonP06

    JonP06 New Member

    I had my mother call my doctor to find out if it was CFS I have while I was at school. They told her that I do not show CFS written anywhere in my chart. I could of sworn I heard the doctors or somebody tell me that is what I have. Now I'm more confused than ever because I have no way of getting diagnosed for this all over again. I'm just really sick and tired of feeling like I have been hit by a truck almost every day. I have been a guinea pig in my child years at a children's hospital with no real explanation to what is the matter with me. I feel like I wasted all my time and money going to the doctors office for examination and blood work and tell me what I don't have and what I don't already know. I'm at my wits end, I have no insurance, no medicaid, no nothing to pay for more office visits or meds. Life is just so unfair.
  2. rileyearl

    rileyearl New Member

    It seems impossible that this has been going on all your life and not one single doc has reached a diagnosis. Yet, I know what you're saying is true.

    Can you get cheap medical insurance through the school? I had some kind of student insurance that was dirt cheap. I got to go to the medical school for colds and stuff. Even at a tech or junior college they might have something. If that's impossible, draft a letter to the Fibromyalgia and Fatigue Center headquarters in Texas. Explain your situation and ask if they have any grants or other options to help you. You might also send the same letter to any big university medical schools nearby. Also, elections are coming up and I know just about everyone in congress is pretty worried about re-election. Well, they should be at least. Maybe one of them will take up your need for help as their good deed to get re-elected. I know the FFC has a loan program that you could probably take advantage of.

    I think maybe the doctors you're seeing are looking at all your medical history and just rehashing the same old news. And if they aren't doing in depth testing, they aren't going to find anything. For example, I have told every MD I've been to in the past 25 years that I think there is something wrong with my thyroid. They always did the standard blood test and said it's probably "just" depression. My first visit with the doc at the FFC resulted in a prescription for thyroid. She said they don't routinely test for T3 or Reverse T3 and most people with fibro can't convert T4 into T3 as is normal. The routine test for thyroid ONLY tests T4. I'm getting energy from both T3 and from the mega vitamins she sent home with me.

    I'm just so sorry you are hurting and too tired to live your life the way it should be lived. Keep posting here and let me know how you are doing. Here's a big July 8 hug ((()))!!!

    Francie
    [This Message was Edited on 09/19/2005]
  3. victoria

    victoria New Member

    at least go over things with you, what tests have been done, the results, etc., and what s/he thinks and recommends for you.

    If necessary, get your mother or a friend to go in with you, taperecord the session with the explanation you have a hard time remembering, so that you get your questions asked and answered, and written down/recorded so you remember what is said.

    It doesn't sound right that you've been left hanging, not knowing what is going on or even recommended.

    hope this helps,
    Victoria
  4. justjanelle

    justjanelle New Member

    I didn't check to see your age, but the drs. office might have been protecting your privacy. They might not be able to give out your information without your consent (even to a parent. Or someone who SAYS they're the parent).

    Try calling them yourself (or asking for a copy of your records) and see if they'll give you more information than they gave her.

    Best wishes,
    Janelle
  5. ilovecats94

    ilovecats94 New Member

    JonP06,
    I'm sorry as I was ill (bladder infection) and found out my doc didn't take my PPO insurance anymore and had to put the $101.00 charge on our credit card. So, I do know how you feel.

    I'm sorry that you feel like you are going around in circles.

    Could you get a copy of your doctor's report to see if that said any info about your lab values (get a copy of those too)?

    I hope you'll get better answers of what to do from others who have been there. Hope things work out for you and you end up finding out what is wrong.

    Hugs,
    Faye