I am finally getting the Drs to listen to me

Discussion in 'Fibromyalgia Main Forum' started by kat211, Aug 18, 2010.

  1. kat211

    kat211 New Member

    Well, y'all know how hard it has been for me to get my PCP to listen. I went to my fibro doc today and told here about everything and she is fully supportive of me firing my PCP and believes I made a good decision to find an endocrinologist. She actually recommended a new PCP that is a women's integrative practice, who I have already scheduled an appt with.

    My fibro doc didn't want to change any of my meds even though they have lost there efficiency until I have the rest of this stuff sorted out.

    The spine dr I saw today also seemed to listen to my concerns and I am scheduled for a few different tests/exams later this week to try and figure out what is going on there.

    The allergist my son and I went to is very concerned about my sinus issues and set me up for a ton of testing as well. I have to wait to be tested b/c I had just quit the antibiotics the day prior to going in. It turns out that there is mold growing in my son's nose, and his symptoms are far less worse than mine. It will take a 90 days or so to determine if there is also black mold in his culture, but for now he is on antibiotics and has to wear a mask when he is home. I am so thankful he is going back to school tomorrow. I, on the other hand, am not allergic to anything I was tested for and my CT was clear, so according to the nurse there is no other reason than the mold that I am having such severe symptoms.

    I am on the verge of moving to a tent in the back yard. I really don't know what else to do at this point. At least I am finally getting somewhere after dealing with the fibro for more than 3 years, the neck and back pain for 4 years and the mold for 1. I know many of you have dealt with going undiagnosed for longer, but after I went undiagnosed w/a closed head injury for a few years and lost crucial rehab time b/c of it, I can't stand incompetent closed minded drs. I want my damn life back!
    [This Message was Edited on 08/18/2010]
  2. Tizz

    Tizz New Member

    I know it's difficult unless you get lucky - but it sounds like you're getting on the right track now with your docs!

  3. kat211

    kat211 New Member

    I missed my EMG appt this afternoon b/c I all of a sudden got really ill. I was just sitting on the couch and I had a sudden onset of severe nausea, dizziness, blurry vision, weakness, and confusion. I laid down for 3 hours and I still feel weak and sick to my stomach.

    Hopefully tomorrow will go better. I am so excited to have finally gotten in with an endocrinologist that I don't want to have to postpone it any further.

  4. kat211

    kat211 New Member

    I went to the endocrinologist today. After going over almost all of my symptoms, forgot to write down so I forgot some of them, he told me it wasn't all in my head! He looked over the 1+year old labs my incomptent PCP sent over and said he was going to run a bunch of tests. He put his hand on my shoulder and told me, 'There is definately something wrong going on with you. But don't worry, we will figure it out and get you better.' I was struck speechless and lost my breath when he said that. I actually had a tear roll down my face. The nurse who took my blood and gave me the saliva test to do at home told me the tests will take 3-7 days.

    I think I might actually be close to getting an answer now! At least I now have a dr that sees there is a problem and is willing to help me and not just tell me it is b/c I am aging. I swear, the next dr that says my problems are natural for people over 30 I'm going to smack them. I AM NOT old. If everyone over 30 felt the way I did we would all have children at 10 so that they could take care of us once we started going downhill at 30. I am supposed to be in the prime of my life! I paid my dues and lived through a crappy abusive childhood and my teens and 20s devoted to taking care of other people, including my abusers. I will not go down lightly.

    Sorry. I am feeling a mixture of vindication and anger at my situation.
  5. Debra49659

    Debra49659 New Member

    I shed a tear as well while I read your post. I found my doctor who listens, never gives up on me, and he really cares. I am so very happy for you, good luck!!

  6. Tizz

    Tizz New Member

    I have to admit I've been very very lucky about primary care docs. It took a couple of years to find her, but we have a terrific family doctor here. She actually CARES. (Yeah, I know, they can't get too emotionally involved or they'd go crazy. But this lady has a warm and compassionate heart, and she's a good doctor too.) My only serious complaint about her is that she is always very busy.

    But that's because a lot of other people are also lucky enough to have discovered her.

    I'm so glad you have finally found doctors who will give you the respect and consideration you deserve, too!

  7. krock

    krock Member

    Would any of you be willing to share the names/locations of your helpful doctors you mentioned above? I am in Ohio, but will travel if need be if I can find a doctor who will really understand and help me get better. Thanks!
  8. ellikers

    ellikers New Member

    So glad you're finally getting competent medical care! Hooray!

    I wish you so much luck and wellness!
  9. kat211

    kat211 New Member

    My endocrinologist just called with my lab results, on a Saturday! Anyhow, turns out everything is w/in the normal range and functioning well. I'm glad I don't have anything additional wrong with me, but then again, I need to know what is wrong with me!

    i have been in such a funk, but I am trying to be positive. At least I can check endocrine problems off of my list of systems to have checked.

    He did suggest weight loss pills, but I can't remember the name. He is going to look up the contraindications w/my other meds and call me monday. I'm not sure if I will take them, but it is something to think about.
  10. Tizz

    Tizz New Member

    There's a list here, that names fibro doctors in Ohio and what their specialties are. The list is made up by PATIENTS WITH FIBRO so you know it's not just doctors who send another doctor back a report really fast, or whatever, it's doctors who actually help people and hear people and GET RESULTS:


  11. krock

    krock Member

    I have used that list. One doc in my area i saw twice, and he is very rude and abrasive. The others in my area don't take insurance. So I am still looking.
  12. skeptik2

    skeptik2 Member

    Have you seen the list posted at the top of the page? There are hundreds of drs. listed by patients there!

    I think you have to open that link and then type your state in the search box,
    from what I remember.

    hope you find a good one...

    BTW, Michigan State U in Lansing has wonderful FM and CFS doctors!
    Call them!

  13. helenajoseph

    helenajoseph New Member

    I am new to this and could write a book on medical blunders, to boot I am a nurse so I have had the joy(not) of working with so many negative health care professionals(?) who are healthy with healthy families that pass judgement so quickly on all. I have just been told about a Dr. Goldenberg who practices in Mass. that has wrote books on a connection between EBV, hypothyroidism, fibromyalgia and lupus, and wanted to share this with others, I have not read the book but it is being ordered.
    I have followed this physically miserable path with an upbeat attitude, for the sake of others, for so long I could scream. My PCP is a good man but can't seem to remember any of my health history, I spend 1/2 my time reminding him. He's not old, just on the burnout train that the majority of healthcare providers seem to be riding. If I had the energy and could remember how to finish a sentence I would go on to school and be the doctor that at least a few people could trust for guidance.
    In the meantime I am searching for a neurologist that treats fibromyalgia, as the latest letter I read on this site suggests that if you can find one of them that they are good since the evidence suggests that fibromyalgia is a central nervous system disorder.
    Wouldn't it be nice to be able to interview physicians instead of being honored to share their presence and then pay them for it? Sorry, I am a little bitter and really struggling with the inability to change the time and money spent to find a reliable doctor. If a major stressor can trigger all of this then one would think they could change the system.
    Well, there I have went off on another tangent.

    Can anyone recommend a good primary care Physician in the Parkersburg,WV or Marietta, Ohio area? And /Or a neurologist in this area that treats fibromyalgia?
  14. Tizz

    Tizz New Member

    Please do find a doctor with at least SOME ability to remember you. Otherwise, you will not get the care you need. I've been there... had a GOOD neurologist, except he could never remember what had been going on with me. He would tell me something during one visit but when I came back and mentioned it to him, he'd look at me very strangely... and of course, to avoid him thinking I might be "making things up" I would just drop it.

    I too, used to be a nurse - and I, too, understand how many patients a doctor sees in a typical week. But if you are a REGULAR patient, who has been with him for at least a couple of years, he SHOULD know you well enough to remember things about you while you're talking with him.

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