Bizarre Bone scan result

Discussion in 'Fibromyalgia Main Forum' started by Didoe, May 2, 2007.

  1. Didoe

    Didoe New Member

    May I ask your input please
    Bone Scan (DEXA) done last week.
    Family doc called to say results are 'normal'
    I have degenerative disc disease, shrunk 2 inches in less than 2 years and take Ultram so the pain in my left hip is bareable for walking and sleeping.
    Rhuematologist hasn't seen results yet.

    What's wrong with this picture?
  2. Didoe

    Didoe New Member

    I'm assuming my family doc who said 'normal' is not making this decision himself but relying on the radiologist's report.

    The scan was very difficult only because I'm not able to lie completely flat on my back due to the discs and pain. My chiro requested a spinal MRI in February, so I'm not making this stuff up. It's like talking to the wall.
  3. crystal72

    crystal72 New Member

    I had a screwed up epidural 25 years ago and pain in my back and left leg ever since. (Stuck me 7 times to get it in and it still didn't work)

    Since, pain management "specialists" injected the area 10 times with DepoMedrol to "fix" the problem. Then I find that the FDA banned such treatment in the 1980's!!

    MRI's show scar tissue in the area of the epidurals, but the radiologist keeps saying everything is normal. These are definitely not the same medical people that I worked with for over 40 years.

    By the way, a bone scan showed "hot spots" in my left ankle, which I have broken 4 times over the years (my balance has always been bad) and in the area of degenerative discs (same area of the epidurals) and they still tell me I'm normal....on what scale???? Normal for my age, for work I did, for medical malpractice, normal for who???

    lol
    Linda
  4. Didoe

    Didoe New Member

    Worker's comp board offered me $$$ because of my back injury. I refused to keep my current job.
    Same people that are deaf since I asked for work accomodations.
    I know one doc at least will be upset that I'm pressing for answers rather than slinking back to my hole for another 10 years of pain.
  5. crystal72

    crystal72 New Member

    Nurses can't get special accomodations for any disability...so I had to quit and therein lies the rub, as the bard would say.

    I can't do anything else because of the CFS with the FM causing cognitive problems...I won't name the whole list because everyone here knows already and I have experienced anything and everything at one time or another and have for years before I had to quit and was too stupid to know anything was wrong.

    Funny that I'm having a moment of clarity today...must be the weather...

    But it doesn't last...I even get lost in my own neighborhood now...was afraid of early onset Alzheimer's for a while...but all MRI's say no. I get afraid sometimes because I used to be able to do anything and everything I set my mind to and had set aside projects for slower happier times. Well, the times did get slower, but so did my ambition and ability to focus long enough to complete or even start something.

    I am a totally different person now and I look in the mirror and don't even see myself any more.

    I guess it's getting late and I'm getting tired...which really never goes away anymore. I don't mean to be a downer, but somewhere in all this mess, I seem to have lost myself.

    lol and all my prayers for whatever it is you desire,
    Linda
  6. Didoe

    Didoe New Member

    I live alone now and am only 54...only, tho it feels like 84.
    I can handle the physical stuff, but I saw my very proud mother this year pass away with dementia that had whittled her down to a mental toddler who kept yelling for me to bring the bedpan.
    I wont go that way.
    period.
  7. crystal72

    crystal72 New Member

    Good morning...the ability to sleep seems to have gotten lost with everything else. Although when you're young and doing 16 and even 24 hour shifts to cover because others won't, you run on 3 hours sleep per day to keep up with your family and home...you are running on pure adrenaline and don't see the train that's about to run over you until it's too late.

    I mentioned being afraid of Alzheimer's...my grandmother lived to be in her 90's...clear as a bell. My mother (whom I mentioned in the other string) is alive and well at almost 80 and sees nothing that she ever did was wrong.

    My pride was being able to survive and overcome all of the challenges that had been put in my path. Now there seems to be nothing left.

    You are so right about the last thing you mentioned. Although my husband is still alive and he is well...that is what keeps me going. If he goes, I go. My boys are fine and I have so few friends left that it wouldn't matter anyway. I told my husband (a Captain in the Navy with almost 40 years under his belt) that the world will remember him and honor him and then I will leave quietly...just a whisper in the wind...I won't be a burden on anyone any more.

    Love and prayers,
    Linda
    PS I know that's not what this string was about...I don't think doctors will ever figure this all out. There are many days that I just don't think they want to. Forgive me for getting off topic for a moment.[This Message was Edited on 05/03/2007]
  8. spacee

    spacee Member

    Bless your heart, you have been through so much.

    That doc seems to be subpar to me.

    Spacee
  9. obrnlc

    obrnlc New Member

    hi didoe, did you ever get that MRI suggested in feb. that you mentioned? they are alot more accurate to show spinal abnormalities and disc/cord problems.
    "normal" on a bone scan can mean nothing really "lights up" like a malignant area, etc.
    re: trained radiologists--i've had one diagnose my fibroid uterus--6 months after my hysterectomy, from a CT scan, so there is alot of guessing involved!
    hope you get a more accurate picture--L
  10. Didoe

    Didoe New Member

    I did have an MRI in Feb'06
    Lumbrosacral spine
    It says, without writing the entire radiology report
    "Severe degenerative rotatory dextroscoliosis of the mid thoracic spine. Findings of significant spondylosis in the lower lumbar spine with significant degenerative disc disease at L4-5 and L5-S1 with disc narrowing, subchondral sclerosis and osteophytes. Arthopathy noted at L4-5 and L5-S1 as well.

    Different lab in Feb 07 (I asked that the above be repeated, but chiro said No, we already know what's wrong there, lets do:
    Cervical spine
    "Straightening of upper cervical lordosis compatible with spasm or strain. Inferior and superior end plate anterior osteophyte formation arising off C5-6 and C-7.

    So what does this mean?
    My left hip literally crunches and grinds when I walk, it feels like its dislocated and sometimes the pain takes my breath away and is so bad it feels like my leg is going to give way. This is NOT mental, this is I go out the door to the subway and dont know if I can rely on my left leg to get there. THe pain is 24/7 for more than 5 years. I'm told its not my hip, its the back radiating to seem like hip pain. Going up stairs I have to pull my leg up and can hear the grinding with every movement. Yes, I tried taking glucosamine/chondroitin, just made my IBS worse.

    I'm not looking to have osteoporosis what I'm looking for is why I have this pain, what it is, can I treat it or do I have to live with it. If I have to live with it, its been very limiting, exhausting and pain. Is there some reason that I do not qualify/deserve accomodation or disability with this and FM (I'm asking myself and will ask doctors)

    I feel like a hobbled horse being forced to drag a load I can't carry anymore and my owner aint listening...
  11. obrnlc

    obrnlc New Member

    hi again-did they treat the findings of 2/06????
    (obviously not!!) while its true that we all have DDD after a certain age, i would think that the results you put on there would cause alot of nerve compression and cause your symptoms exactly, also the way you would automaticallly walk in response to above findings would cause an abnormal wear and tear on the hip joint--but then i am just an OB nurse.

    it seems to me that the findings in feb. of 06 warranted some type of treatment then, no wonder you have been thru so much trying to work thru this til april of 07. a quick google of most above findings would at least indicate maybe neurontin for nerve pain or some type of spinal decompression (i've been reading of a procedure of some type of decompression-not sure what, tho)

    i would think that area would light up like a christmas tree on bone scan, when will rheumy eval. and who evaluated that mri?

    (sorry if i am off base here, as i am certainly no expert, but it sure sounds painful on the report!)
    good luck---L
  12. crystal72

    crystal72 New Member

    I worked in all parts of the hospital over the years from OB in the beginning to Ortho, ICU/CCU and ER at the end. After just a few years of shoving and pushing, the sacrum (lower part of the spine which is supposed to be naturally fused) moved separately whenever I did. I don't know if it was from a fall when I was young...no one knows...the doctors could care less.

    The point is that over the last 20 years or so that I worked, almost every day at some point, a nerve would pinch and a spasm of pain came that caused me to double over and almost vomit. Not pleasant in the middle of trying to run a Code Blue.

    It never shows on the MRI's because they have you lie flat...difficult for me...but that part stays in position. My doctors do believe me because I can reproduce the movement of those vertebrae. They now have "flexible MRI's" which I can't get my doctors to order. They say enough is enough. Now I rarely even get to go sightseeing because in spite of pain medication (which does seem to at least help some of the FMS), that particular pain always comes through and on a scale of 1-10 becomes 15+.

    I believe that when a radiologist says "normal" any more, it's because it's a problem that can't be fixed.

    And to Obrnic, in the thread on Antidepressants, as much as we joked that nursing was what we did, not who we are, I believe that it becomes a part of your identity and when that is lost...so goes everything that identifies who you are with it. I know I'm much older...probably no wiser, but when our livelihood is taken away or destroyed, so goes our lives.

    Love and prayers to you all
    Linda
  13. Didoe

    Didoe New Member

    'treatment'was chiro told me I have a bad back and it will likely get worse, dont use medications only adjustments. Pain was already so debilitating, no meds was not an option as I have to work.
    In '06 Family doctor sent me to first rhuem who diagnosed FM. Said no cure, Elavil is only option. Chiro then retired and gave my records to new chiro I see now. I saw a new rhuem for 2nd opinion because Elavil is not an acceptable option. And I gained close to 100lbs on Neurontin when it was prescribed for depression 15 years ago, its also a no go. Lyrica didnt do anything, it was totally ineffective, not even a side effect, Xanax is the same, absolutely useless, not a buzz even.

    I read the entire Merck document. Rhuem I'm seeing kept examining my hands, but hasn't made a definitive diagnosis. I had arthroscopic knee surgery 20 years ago, surgeon warned me postop I already had arthritis in my joint and it would likely be an issue later.

    Arthritic issues have been going on since my 30's at least, it just seems really early. I would be more than relieved to hear its osteoarthritis, but that doesnt explain the fevers, chills and depression, the FLU-like symptoms for years.
  14. crystal72

    crystal72 New Member

    I started with the back pain...which is rapidly ruining my left hip because I lean to that side.

    The fever, chills, malaise and other symptoms came after Hepatitis B vaccines in the nineties...it seem the batch that a group of us was given was contaminated. Down to the last nurse in the group, we gradually one by one had to stop working...It seems that it triggered the CFS and even trying to work with the pain, I couldn't work with the exhaustion and continuous fevers...they don't like sick nurses to work...might make the patients sick...lol

    Get thee to an immunologist...a good one...before it takes everything else away. Bones can be fixed (usually) and hips replaced, if need be, but this problem seems forever.

    Also, if you can, find an attorney...the ADA laws say that you should be able to find work accomodations. I don't know what you do...for nurses it doesn't have much options. But for other workers, it is a federal law.

    Love and all my prayers,
    Linda

    Sorry for the downer letter...it rained and stormed here last night and my moods seem to follow the weather these days.
    lol
    Linda
  15. Didoe

    Didoe New Member

    that's what you are Linda, a treasure
    thank you for writing everything and sharing so much, it was really helpful.
    when you mentioned the hep B vaccine, i remembered i was given a "rubella vaccine" in '83 when my daughter was born. the nurse came in waving an uncovered syringe announcing i had to have a vaccine, out of nowhere. i refused and she called in 3 nurses to assist. 4 against 1, not much i could do.
    if it was rubella, if it wasn't only G-d knows what they stuck into me and why. It wasn't more than a year later the 'flu' fevers, etc started and got progressivly worse. I've had alot of blood tests but I wouldnt know now what to ask for.
  16. crystal72

    crystal72 New Member

    That's exactly what happened to me. And we as a group couldn't even get the hospital to look into it.

    That's why I said in the Reality Check string that it would take pages to talk about the things I have been through, but I don't want to bore any one and I certainly know that there are people that are much worse off than me.

    But I know I'm lucky to have someone to help me through this and I am not alone...yet.

    My heart goes out to you...I don't know if I have the strength left to do this alone.

    Stay true to yourself and all my prayers...
    Thanks for listening to me, too...
    Linda
    PS Ask for a complete immunological screening...an immunologist is better than a rheumatologist because they see the finer points better and the subtle changes in all of the immune factors...if they're worthwhile at their jobs. Like I said I've lost a little faith these last few years when even doctors that had knowm me for over 30 years doubted me. And I was always the nurse they asked for because I had always been taught that the patient comes first, above all else.

    Godspeed...let me know how you are...
    Linda[This Message was Edited on 05/04/2007]