Guess what I've been living with!

Discussion in 'Fibromyalgia Main Forum' started by Remnant, Dec 27, 2005.

  1. Remnant

    Remnant New Member

    Hi fellow sufferers.

    Real quick background on me, for those who don’t recall my infrequent posts:
    So far we have FMS on me, high WBC, high ANA’s High ESR rate, constant unrelenting pain, i.e rusty skeleton, bruised flesh and sun burned skin, that’s me. I’ve seen 6 Dr.s in the last 2 years, we have gotten NOWHERE. Just shoving RX’s down my throat, but of course too scared to give me 1 that works, thx to the DEA insanity…

    Incidentally, I live in an area where very few Dr.s know anything about FMS and I’m now thinking IN GENERAL. If anyone lives in Northern Virginia and has info on an educated Dr. that takes AETNA, please let me know? I got Russel Rothenberg, however he does nto take AETNA and office visits are up to 1k a pop. I don’t have that kind of cash laying about.

    I’ve told these Dr.s for years, I have terrible neck and upper back pain, shooting pain and it is unrelenting. I had an MRI 3 months ago, the 12 yr old (insert sarcasm) radiologist, read my MRI and pronounced me “normal” w/ minor age wear and tear. So my Pain Management Dr. went over the repots only w/ me, and assured me I was normal. So, once again, PAIN ALL IN MY HEAD

    I took my MRI and also neck and back Xrays to a NEW Dr. today. Guess what HE found….guess…

    I’ve been living with a bad herniated disk in my neck C-6 and I even have bone growth trying to fuse with my next vertebrae C-7! He said OF COURSE YOU ARE IN PAIN! It is causing tightness, stiffness, fluid flow is scarce there, it’s drying out more or less, and it also explains lose grip and tingling in my arms/hands.

    Just goes to show folks…WE, are NOT the crazy ones! And we’re NOT drug seeking, and we’re NOT making this all up, and we’re NOT wimps. I cried in his office, cried because finally I saw EVIDENCE, of just ONE of my many many complaints. Evidence, and VALIDATION, although it was bad news, the Validation was important to me…and I will not give up finding more answers.
  2. MsE

    MsE New Member

    Validation makes a whole big bunch of a difference. There is nothing worse, nothing, than the old "it's all in your head" sneer.
  3. Remnant

    Remnant New Member

    Thank you for understanding!

    I realize my post is a bit passionate, but I just got back and still I'm reeling from my visit. Now to request the misdiagnoses.... hehe, and my NEW Dr. is sending my MRI's to a Radilogists he knows, to have him verify what he found. I saw exactly what he was talking about as he pointed it out to me, it's plain as day.

    Now onto the rest of my body!

  4. Bambi

    Bambi New Member

    of us who DO have various identifiable things wrong AND for those where nothing is found. There IS something else going on with those of us who DO have FM in the central nervous system that just doesn't show up on a TEST. They may never find something they can put a finger on or
    show on a test, but it's there none the less.
  5. Remnant

    Remnant New Member

    These are the same and only MRI's, (taken 3 months ago) They were read incorrectly by the radilogist at that time. And My Pain Dr. only bothered to read his report, and relay to me that I was "normal" and my pain was...all in my head OR I was making it up, OR I was a cry baby, whatever they believe. (?)

    My New Dr. looked at the MRI's, and he found the herniated disk, and compared it to some 1 year old Xrays and also saw the bone growth, coordiating with the herniated disk on the MRI. No one caught the bone growth either.

    Yes, it's a case of really poor oversight on the old Dr.s part. As posted above, it appears glaring abnormalities are simply overlooked or the attending Dr at the time, is just hurried, ignorant, incompetant, does not care...who knows?

    It's a shame I have to pay good money over and over again and make numerous office visits, just to find a DR who cares. And to think, they take oaths to help people...
    [This Message was Edited on 12/27/2005]
  6. darude

    darude New Member

    On MRI found pituitary abnormality and 40 small round foci. Haveing third MRI in January also one of my entire spine. Ct os spine showed 2 bulging disks and one DDD with vacumm phenomena (means has dissapeared)toching S1 nerve roots bilaterlally. Had injections and nerve blocks which took away my severe back pain completely but have been left with leg pain and weakness. Therefore not much holding me up in lumber spine. Anyway I intend to get agressive and gets all tests done even if have to go to ER to speed things up. I have had two years of this and they kept telling me i was perfectly healthy UNTIL NOW.
  7. Remnant

    Remnant New Member

    Your poor daughter.

    Incidentally, I am overweight as well. Dr.s usually attribute my complaints to being overweight. Usually, heh, I mean ALWAYS.
  8. lovinlifeinAK

    lovinlifeinAK New Member

    I had a similar experience. I found that not only do I have spondylothisis (sp??). I have 2 torn disk in my low back. On has one long tear and the other as three tears. Since I was born w/ spondylothisis I probably would never notice back pain as my boday is use to it. Which the doctor still did not get, but that is another story.

    But anywho I have disk fluid "leaking" onto my nerves in the spinal column, which could be causing some of my problems. It is kind of like putting acid on the nerves there. Hope they find out why other things have happened so that I can get my back fixed. Just thought I would share.
  9. Musica

    Musica New Member

    that a doctor and radiologist could miss a HERNIATED DISK on an MRI! I mean, just because someone has a diagnosis of FM means they can't have another problem, too? How could they not see something like that???!!! It's ridiculous that you have had to live with that kind of pain for this much longer because they were incompetent to find a herniation!

    A doctor who charges $1,000 for an office visit? WOW!!!
  10. jaltair

    jaltair New Member

    In this current system of care we are our own advocates. If we want answers, we have to ask the questions and push to get answers that are the truth.

    Health care today is focused on making money, and the only way doctors or clinics can make money is to get as many people thru as possible. That's why doctors will only focus on one thing at a time, then schedule a person in for another visit on another problem.

    When a person shows up with multiple things happening, and I definitely do, it totally frustrates the doctor.

    Give them a blood pressure problem one time and a follow-up on the cholesterol level.

    Don't give them problems with pain from costochondritis and right arm/hand pain with numbness at the same time! Or, for goodness sake, don't give the doctor a problem with irritated bowel and severe migraines at the same time. That's defintely a "diagnosis overload" for many of the doctors today.

    Oh for the days of yore when the family doctor listened and took time with a patient because that patient was a friend and fellow human being and not a "symptom" and / or a profit for the purse!

    Warm hugs, Jeannette
  11. matthewson

    matthewson New Member

    You were smart to get a second opinion! There are good radiologist and bad ones, just as there are good Dr's, ect. I work in a lab and we have good pathologists and bad ones. We sometimes know more than the bad pathologists, but theirs is the final say! It really bothers me a lot, but nothing is ever done about it!

    I urge everyone to get a second opinion about everything! If you feel that the first diagnosis is not right, go to another Dr. and maybe a third, just to be sure. Believe me, what you wrote is no surprise to me! I've seen it!

    Take care, Sally
  12. bpmwriter

    bpmwriter New Member


    my chiropractor took some x-rays of my back last week and for the first time ever ( i had a brain mri and other leg x-rays done before ) he let me view the x-rays with him so we could review them together. for me at least, it helps me to connect with my body to actually be able to view the x-rays. everyone else said, "they're fine, nothing abnormal" while i was thinking, "wait, i wanna see my brain so i can make sure it's still there!" my chiropractor took the time to educate me to exactly what was going on with my spine.

    i have some small bone calcifications in my neck that are indicative of an old whiplash injury (though i can't recall when that might have occurred) and the curve is off, which can cause chronic tension in the neck and shoulders. might also be the source of my headaches. i also have some
    "towering" of the spine in my middle back (thorasic) where my spine loses its flexibility and goes straight and stiff for a few vertebrae. i also have one leg shorter than the other which means i carry an extra 12-14 on my right side. what does this all add up to?!? PAIN.

    docs need to spend more time educating their patients. unfortunately, i think it's going to get worse before it gets better due to the sad state of health care in this country. moral of the story: when you find good docs, hold on tight!

    eddie
  13. Remnant

    Remnant New Member

    BPM Writer, you sound like me.

    My Neck does not curve IN either, in addition to the herniation and bone growth on C-6. I have slight scoliosis, upper back curvature as well, all causing me lots of REAL PAIN (not imaginary).
    This NEW Dr. also said to think of any injury I may have had as a child, but I can't recall any trauma. Yes I was in a mild car wreck as a child, but never remember pain. (?)

    This evidence, also makes my pain mreo "real" to my husband. I hate to say it, but while he said he understood, there are times he thinks I'm being melodramatic. Well, this shut him up.
  14. Remnant

    Remnant New Member

    I am so sorry for your suffering!

    I wish I knew more abotu lobbyign for better care for people like us, I'm sure it's there... Im just not that far along in my researching yet. I DID read an article LONG ago about a brilliant Dr. Bennett (sp?)_ in Orgegon who completely understands his patients pain & pathology and DOES Rx adequate pain relief. He also stated that WE, do NOT get addicted like recreational users, simply because we need it to do mundane crap like take out the trash! We're not sitting around getting high.

    So, I do wish more Dr.s were as eductaed and *ahem* gifted with a spine, as he is. Now that doesn't help me one bit, as IM in Virginia and not wealthy enoguth to go out of state for treatment...BUT it gives me HOPE that his research and diligent work will spread to po-dunk towns like mine, and into the not so open , minds of other Dr.s.

  15. kch64

    kch64 New Member

    Hi Remnant,
    Unfortunately, I don't know any docs that take AETNA. I'm going to Rothenberg in January to bring him into the loop, but I have BC/BS.

    How is he by the way? Is he a receptive doctor?

    I know Dr. Teitelbaum is up in Annapolis, but I don't know if he takes insurance or not.


    Will let you know if I hear of anyone.

    Kendra
  16. Remnant

    Remnant New Member

    Oops! I wrote "I got Rothenburg" but I meant to say, I was given his name as a Great Dr. to see, sometimes I get ahead of myself and need to learn to slow down and realize I am talking to people who don't know me! LOL But his office staff told me that an uninsured visit is very expensive, aveagr up tp 1000.00 and that he did not take AETNA. I was so sad, I thought I'd finally found a Dr. who knew what to do.

    Honestly, every other Dr. I've seen dances and skirts around the subject of what's wrong with me. Even the rheumatologist in town that EVERYONE loves.

    All but this one I found in Sterling VA, who is a only a Chiropractor. His Dr. Donald Gauthier. I'm not sure what is within his power other than advice and manipulation. But he's terrific. He knew all about my situation before I could open my mouth. He knew things he couldn't have known w/o seeing a chart on me, which he did NOT have, as I had not sent any to him before this week, before the MRI & Xrays. He knew things about my liver, blood work etc, telling me this while simply feeling my spine. It was intense and actually restored my faith in, well, faith! lol

    If Rothenburg takes your insurance by all means, try him, I heard he was good. And if you want to see a Chiropractor Dr, do see Donald Gauthier. He is a family man, he advocates healthy eating, but he't not pushy or in your face w/ his beliefs. He gets patients that other Dr.s throw away, because they can't be bothered, and he cares. He watched me cry as he told me about my neck, and knew my frustration level at having been to so many Dr.s and been treated like a number.
    He assured me we would keep working, keep going, but that I had lots of work to do. I am very overweight and lots of Dr.s stop at that. But he knows, he knows it's not the fat. Which came first, the pain or the ill health? He believes the body stays exhausted when it's always trying to heal itself. Anyway, I could go on and on....