How Long should you wait????

Discussion in 'Fibromyalgia Main Forum' started by Rosesark, Jan 15, 2003.

  1. Rosesark

    Rosesark New Member

    Hi all, still no help, still no definate diagnosis. I am getting worse, the pain is almost interolable,my legs are so weak i can't walk without a walker or wheelchair. I called the neurologist and the rheum, that my PC here sent me to because he say's "they're brilliant". I've seen each one once. The neurologist ordered an EMG, did it last friday. I called and asked to just be put in the hospital to finish the tests since they are 2 1/2 hours away, or at least schedule one one day and the other the next and we can stay in a motel. I had to call my primary here last thurs to beg for a pain shot. My primary also called the rheum on friday. As of today, neither one of us has gotten a call back. I don't understand this at all. I have been this bad since august and my doc here thought that ft.worth was the best place for me to go, he even had to strike a deal for the rheum to get me in. Do they know how cheap that makes me feel? I mean your own doc should not have to pay the guy to get him to see a patient of his. He says that if we do not hear from them today, then he will try to get me in to Baylor, and at this point, i am ready to leave right now! Had to vent, sorry, but this just adds to my feeling like all doctors think things are in your head or are not as bad as you say since they can't see anything. My neck is bright red but white around my adams apple, my cheeks have also been red, but the lupus tests turn out negative. I can't sleep for being very hot and sweating to being very cold and feeling like my shin has vicks or something on it, this goes on all day, all night also. I am at my wits end. Why won't they help me and is there anyone out there who will? Rose
  2. griswoldgirl

    griswoldgirl New Member

    the waiting and the confusion is all part of it. All facilities are underpaid and understaffed with technical people as well as nurses.

    My husband has been an RT(xray tech)for years and I am sonographer(do ultrasound) and also have been a professional patient for years now, LOL with all my ailments. The first year that I worked in health care and I saw what goes on behind the lines, so to speak and the attitudes of some health care workers it is a wonder we get any care at all at some facilities.

    Then there are folks like my husband and I and some warm and wonderful people whom work in the business and care and will make a difference in your care. There are also doctors whom do care and will show it, it is just hard to find them. I know I have a good othopedic surgeon and a good pain management doc other than that my health care team stinks and I am working on that-back to you. It sounds like you have been sent somewhere for a bunch of tests--what are they looking for?

    I have had the red cheeks etc for years and have been told it is very common with fms-no lupus here either, they have tested me to death over the years.

    Are you on any type of pain medication at all? Are you diagnosed with anything yet? sorry about all the confusion/questions you are going through, but I have walked in your shoes and feel your pain as I read your post.

    Try and hang in there and be a pain, if they do not call you when they say they are going to you call them back. Again and again if you have to.

    Between all the nurses, doctors and people I know in the health care industry they all say the same thing--YOU MUST TAKE CONTROL OF YOUR HEALTH CARE get copies of allyour tests that are run so that when you go to another doctor you have the results already for them.

    You are a beautiful creature of god and deserve to be treated with respect, even if you have to demand it1 i say call them again if you do not hear from them today.

    hang in there

  3. Cactuslil

    Cactuslil New Member

    I too have been where you are and it hurts, is frightening et al. and neither you or any of us on here can definately tell you what you have going on there.

    I am a south texan and live in the very worst county for compassion there could possibly be....however after 14 mos of no care (thank you Gov. Bush) I finally prevailed on a 6-year quest for disability and could get a doc. I prayed and followed my Guide and I have the most compassionate doc ZI could have gotten. My ins. plan has both the good, bad and ugly but it IS.

    Do you have the ability to go to your primary and tell him or her how necessary it is for you to have pain relief? Pain can cloud your perception of other symptoms that could help define what you are having ie. could be a hidden migraine...that happen to me. I hurt so horridly I had no idea I had a migraine until the neuro at the ER put imitrix in the IV and suddenly I realized that I had pain so severely it clouded a migraine!

    My psychiatrist refused to treat me at one point unless I got treatment to relieve the physical pain.

    Dig in. Try your best to get pain relief, even for a short time, so you can assess what you need to do. Love CactusLil'