Learned Very Interesting Things From New Doctor

Discussion in 'Fibromyalgia Main Forum' started by FibroPainSufferer, Mar 2, 2007.

  1. FibroPainSufferer

    FibroPainSufferer New Member

    First, I'd like to thank everyone for their warm thoughts, well wishes, prayers & concern! Thank you Shelby!!! Sorry I didn’t reply sooner, it’s been a crazy week.

    So...about my new doctor, I wish that everyone out there who is NOT happy with their current doctor, could see this amazing man! I started my appointment with thanking him for seeing me since he's not taking new patients (I was able to get in because my husband & his parents have been going to him for years) his reply was “I should be thanking you, it's like someone gave me a banana split & they are thanking me” not only did I find the compliment nice but it broke the ice & mad me laugh.

    I told him why I was there & I showed him all my test results. This included an MRI that was done in June of 2006 on my lower back. This has always been the most painful area for me ever since a car accident back in 2003. Now keep in mind that the Orthopedic doctor, who sent me for the MRI, & my previous Pain doctor both saw these results & both said my back was fine. My new doctor read it over & was shocked to hear that I was told this. He took out a big book with diagrams of the human body & while explaining to me that my S1 vertebra has slipped down into the lower cavity (can't remember the name of this area but I think it's called the sacrum or something like that) he showed me diagrams so I could actually see what he was talking about. He asked me if I had neck pain & I said YES!!!, he said that this degenerated disk can cause neck pain also. It seems that my spine is lower than it should be. I was in total shock that there is something really wrong with my back. It took 3 doctors to find this out...unbelievable!!!

    He does think I have fibro but another interesting thing I found out is that there really is a test that can be done to confirm this. Not just touching the certain trigger points like my last doctor did but it's a machine that will touch my muscles or nerves. I'm having the test done on Tuesday. He explained this test to me also but I think I was still in shock over my back problems that I can't remember the exact name of it. He also asked me how I sleep & I told him I have trouble falling asleep because of the pain so after talking to me for 1 hour, yes, 1 hour!!! I think I got a nasty look from everyone sitting in the waiting room when I walked out :) he noted down all my problems & the tests he wants me to have done.

    He told me to stay on the same meds but he increased the strength of the hydrocodone & has me taking it every 4 hours instead of the 8 because apparently Prozac, which I've been taking for 11 years, absorbs pain medicine faster. I kept complaining to my previous doctor that about every 2-4 hours my pain would come back but it went in one ear & out the other. The only other thing he’s changed for right now is that he has me taking 1 20mg extended release oxycontin before bedtime. This is incredible because not only am I sleeping better but I don’t wake up in as much pain in the morning as I use to.

    I just can’t believe how much I found out from just 1 visit with this doctor and I’m feeling better then I have in months. Don’t get me wrong, I’m not cured but I’m not in as much pain as I was.

    After I have the test done on Tuesday, I'll let you all know more about it.

    I hope you're all doing well and I'd just like to add that if you are not happy with your current doctor, DON'T give up! Keep trying until you find that doctor who will listen & be concerned with helping you. I was miserable before seeing this doctor & I can't tell you how much better I feel since I talked to him!!! It makes such a big difference!!!
  2. Juloo

    Juloo Member

    It's as if the clouds part and the sun breaks through when we can find someone who not only BELIEVES us, but looks beneath the surface AND provides support with appropriate medical care. I think I would have been burst out in (relieved) tears!
  3. jmq

    jmq New Member

    I am so glad you found a good doctor...I am still looking. I am looking forward to the test you talked about for FMS. That would be good for disability proof

    let us know
  4. bigmama2

    bigmama2 New Member

    i'm so happy for you!!!!

    keep us posted!!!
  5. blkkat

    blkkat New Member

    man where is this dr? your story is mine. my lower back is the worst and my legs hurt so bad, take a look at by bio if you like. i also take prozac , oycodone 5mgs 6 x day, oxycontin time release 10mgs 2 x day,(( 400mgs nuerontin that helps w/ the numbness/tingling in legs and feet, do you get the leg pain? sharp stabbing pain ? ))i also at nite to help sleep i take 400/800mgs muscle relax. and 1.5 clonazepam . but ive seen so many dr and they also say they cant see anything wrong w/my back. OH MY NECK HURTS REAL BAD TOO CAN HARDLE TURN IT. i wonder if the test your going to have is called an EMG?? i just had my 2nd one done this last tue, it testS your nerves, so painful , at least for me. but again they say we cant see anything wrong. but i have FM , CFS. well good luck ,let us know how your test goes. GOD BLESS - BLKKAT
  6. FibroPainSufferer

    FibroPainSufferer New Member

    Juloo, it's funny you should mention “relieved tears” because when I was done talking to him & getting ready to walk out of the exam. room, I gave him a big hug. I think I caught him off guard. And you described it perfect...the clouds did part & the sun came through!!!

    JMQ, I'm pretty sure he called the machine “Tens” which is what Prickles has mentioned many times on here but don't quote me on that. I'll try not to go into shock on Tuesday so that I can write down everything. I need to do that these days. When I went to him I didn't take my second round of meds for the day so that he could see how bad the pain gets. And of course when the pain gets bad, that's when the fibro fog kicks in.

    This doctor is listed under Internal Medicine but he specializes in pain management. He was also a guest on our local cable channel talk show when Terry Schiavo was in the news. It just seems that he really enjoys doing what he does.

    I'll try & pass on everything I find out from him because it may help someone with disability proof, questions for their own doctors, deciding if it's time to find a new doctor, etc...

    Thank you Bigmama2!!!
  7. FibroPainSufferer

    FibroPainSufferer New Member

    Our stories sound exact!!! You might be right on the test because you mentioned it was painful & my doctor told me I would be under an anesthesia. Can you tell me more about the test?

    I also take Neurontin, 900mg a day for me & yes, I do have terrible pain in my legs, mostly in my upper legs. It gets worse when my lower back is bad!

    I take Klonopin also but it was given to me back when I was put on the Prozac for my panic attacks, anxiety & depression.

    I feel so bad, I wish I could take you to my doctor because I know what it’s like to go from doctor to doctor and they either tell you there is nothing wrong with you or they prescribe medicine that is so pathetically weak that you just wish they could live in your shoes for 1 day!

    I hope you feel better & don’t give up on trying to find a good doctor, I know it’s not easy to do but when you do, it makes all the difference!!!
  8. cindymindy

    cindymindy New Member

    Please let us know the name of the test on Tuesday when you get back from the doctor. I have to go to my doctor on Wed and it would be great to ask for the same test.
    Thanks, cindymindy
  9. shelby319

    shelby319 New Member

    I'm sooo happy that everything went so well with you and now you can relax some, and let it all sink in!! No more anxiety either!!!

    I've been waiting and looking for a post from you about your appt. and kept wondering and worrying if it did go alright for you and here you are today with the best news I've heard yet!!

    This Dr. sounds amazing to say the least, and very compassionate in his belief to help you and to do everything possible to comfort your worries. Even taking the time out to go into details to describe your back problems, after going to three different Dr's to no avail!! It just amazes me that not one of the other Dr's even thought to go into detail, or to even tell you there was something wrong with your back condition, and it took this particular Dr. to see it and explain it all to you and help you out of your pain situations!! Awesome!!!

    I'm so overwhelmed with joy for you....I've been working with the Americanchronicpain org now for sometime and this is what I try to do, is to get people the help they need and the correct diagnosis and treatment options. This is why I was so concerned about how you felt going into this Dr. and praying that you did get the right compassion, understanding, respect, without feeling its all in your head or being told there wasn't anything they could do for you. Mostly because this is a disease nobody can see, its so hard to have anyone listen, let alone take us seriously or give us the respect we deserve!!

    I think the test he might be talking about could be a nerve conductive testing, where they would hook you up to a machine with electrical "shock" patches to test your nerves throughout, to determine whether you have any nerve damage due to the degenerated disk in your spine which will lead up into the neck area. This is what I had done when I also found out I needed cervical spine fusion, but there is a connection from the back area too that causes this pain and spasms. Its that one sciatica nerve that runs all the way up and down your back and spine area leading into the neck area too.

    It can affect all areas of pain with neck, arms, shoulders, back and even leg problems. As thats where the nerve goes into all those areas. I think he's doing the right thing by testing you, whether it be with a nerve conductor test or something else, he's getting to the "root" of the situation. Hehehehe~~ This should also give him a better understanding of your pain and your limitations.

    I see he did give you the long acting 20 mgs of Oxycontin, which is a very good narcotic. I was on it too for awhile, then I had to have it changed after my surgery to Morphine as the pain was too much and couldn't be controlled. But at least now you can sleep better and not be in as much pain either, which is a huge help!!!!

    After you have the test done, when do you go back to the Dr's for your results and an update on your condition? I'm so happy all of this had a very good outcome for you and I'm sure your feeling alot better because of just the appt. itself!!

    I'll keep praying you feel better with each passing day and have a good outcome with your test on Tuesday. Please don't worry about the test if its what I think it might be, because at least you'll have some more answers to ease your mind as well!!

    I'm soooo happy for you Fibropainsufferer~~~maybe now you can start to think about changing your name when you feel better~~~hehehehehe~~
    Gentle hugs and well wishes,
    I'm sorry I got kind of carried away with my post, but I'm just so pleased with your outcome~~
  10. blkkat

    blkkat New Member

    hey f.p.s, im not sure now if its the same test because both times and from two different dr gave me the tests with out anesthesia. they took little needles and put them everywhwere, my feet, calfs,knees,behind knees ,ankles, toes. thighs, hips, lower back all around that area, mid spine THEN ONE AT TIME IT WOULD SHOCK ME ,TO TEST THE NERVES AND MUSCLES, A FEW PLACES HURT MORE THAN OTHER PLACES, LIKE MY CALF STAYED IN A CONSTANT CHARLIE HORSE ALL DAY!!!! and my spine hurt real bad. just doing that test made me feel so much worse. ITS SURE WOULD OF BEEN NICE IF THEY DID GIVE ME ANESTHESIA! let me know ok. i hope it wont hurt you if it is the same test, a friend of mine had it and it didnt hurt her at all!! to bad you didnt live closer, it would be great to walk into a DRS office together and ask now why if its all in (my head )is this person feeling the same way? are we both crazy? not saying you are ,you know! keep in touch new friend GOD BLESS- BLKKAT
    [This Message was Edited on 03/03/2007]
  11. sugarpeach

    sugarpeach New Member

    I too suffer from FM/CFS and terrible neck pain and leg pain. I am so happy that you found a Doctor who is going to help you. It seems like he loves learning about things that will help and didnt just get his degree and be satisfied with all that he learned in his years of training to be a Dr. It is also such a validation for the person who is chronically ill to be believed and not thought to be a nutcase or hypochondriac. Good Luck with your new Dr. You deserve this!!!

    Could you let us know where he is located. I havent read any of your other posts so I dont know if you already told us.I live in South Jersey and have a really good Dr. but I am always looking for Drs. near the Tri-State area. Peace-Susan
  12. mujuer

    mujuer New Member

    if this dr. helps you. I can find nobody here in the whole seattle area who seems to want to deal with my fibro and would gladly travel somewhere to find somebody who would. I am excited for you and can't wait to hear the results.
  13. palogirl

    palogirl New Member

    Who is this wonderful doctor and where? I too have been to many doctors and am not satified with my current doctor. He put me on an antidepressent at my last visit. I feel he is so far off base with the antidepressent but it has helped me sleep better, but spacey and feeling drugged all day. What is this great test that are going to do Tuesday? We are all excited to hear from you. My legs are so cramped and burning and in constant pain.
  14. nightngale

    nightngale New Member

    Can you tell us who this Doctor is? I have seen other's names posted. I think it is allowed. What state are you in? I do have some wonderful docs but just had another bad doc experience!
  15. desertlass

    desertlass New Member

    pain similar to what I have-- it's called sacroiliac joint dysfunction. I'm guessing because he mentioned your sacrum (the lower portion of your spine that is shaped like an upsidedown triangle) and how it is subluxated where it hooks onto your hips, this is where S1 and S2 are at-- the very top is where those two dimples above your glutes are. This injury is essentially a sprain to that joint, and causes a great deal of trouble throughout all the pelvis and up the back and down the leg. This does not show up on a lying down X-Ray or MRI, so people go through years of doctors blowing them off just as badly as CFS/FM patients (lucky me, I have both!)

    Many people who have been in an auto accident have had a problem in this area due to being in a sitting position. If you want to understand more fully what he might have been diagnosing and showing you on diagrams, you can go to kalindra.com and that has all the info on the lower back you could ever want. Scroll down to the link on "Sacroiliac Resources". There is also a resident retired PT there, named Richard DonTigny who will answer questions, but go to his FAQ, first. It's all free. You can read at your own pace, see diagrams, pictures, read about others, and see if the info there "fits" you or not.

    There is a whole regimen there called "Manual Rounds" that were designed by DonTigny who now lives in Montana, but he wrote articles on the SI joint for publications like JAMA, so it's like going to a world class therapist from the comfort of your own home... it's truly an amazing site. The regimen is several corrective maneuvers you can do to help move your SI back where it needs to be. You can print out any of the info there and take it to your doctor, as well. Both my own PT and the physiatrist who treated me later considered him to be their authority on how to treat that area.

    If your doctor was able to recognize this problem alone, then you have indeed found a treasure. What kind of doctor is he? GP, specialist, osteopath (D.O)? He might be able to treat your back manually as well as your other problems. One stop shopping!

    Good luck to you!

  16. blkkat

    blkkat New Member

    wow thanks for the info im going to look up that web site. ive had 2 diff dr say the same thing about laying down wont show my problem, but to find and have ins, pay for a standing up mri or x-ray is a diff. story. thanks BLKKAT
  17. blkkat

    blkkat New Member

    hey DR ANDREW HOLMAN IS IN RENTON AND IS A VERY GOOD fm dr HES A REUMY. blkkat HIS # IS 425-235-9500
    [This Message was Edited on 03/04/2007]
    [This Message was Edited on 03/05/2007]
  18. nightngale

    nightngale New Member

    Just tried a new rheumy but not too happy....
  19. FibroPainSufferer

    FibroPainSufferer New Member

    Blkkat, I think the test you’re talking about is one of the tests I’m going to have. It may even be the test I was suppose to have last night. I had to cancel my appointment because I woke up with one of my terrible headaches yesterday. By lunchtime, I couldn’t even lift my head without getting dizzy & nauseous. I guess even with better medicines fibro never goes away. But I did talk to the nurse on Monday about the test & it sounds like what you are describing. She said I was not going to have anesthesia. She said if they do cortisone or facet injections to control my pain, then I’ll have anesthesia. And I know what you mean about the “crazy” part. Anyway, the nurse said last night’s test was a lumbar study called a neural scan, I’m not sure if I spelled that right. They were really good about canceling the appointment too. They charge $25 if you don’t give them 24 hour notice & when I mentioned this yesterday & told her why I was canceling, she said not to worry about the $25.00. I thought that was very nice because I don’t know about everyone else, but I’m constantly putting money out for meds, doctors, tests, driving to the appointments, etc…it adds up! Thank you for your kind words & keep me informed as to how you are doing!

    Sugarpeach, he’s located in Bala Cynwyd, PA but unfortunately he’s not taking new patients. I got in because of my in-laws. But it can never hurt to call & explain how you heard about him & see if he’ll see you. If you want his name & phone number, let me know. And thank you for your kind words!!!

    Joannla, is your doctor as good as “House” or just obnoxious. I think we all need Dr. House, he can diagnose anyone...minus the attitude :)

    Mujuer, I wish I could take you & everyone on here who is not being treated good by their own doctors! It’s so frustrating trying to find a good doctor!!! First, you have to find one who believes that fibro is real & not in our heads.

    Palogirl, he’s located in Bala Cynwyd, PA, which is right outside of the city. I’ve been on an anti-depressant for 11 years & I would never want to go off it but it sure doesn’t help with pain!

    Nightngale, I’m not sure if we can mention names, I’m trying to be careful because I mentioned the website for Biofreeze on here about a month ago & I got a warning so I’m not sure about names of doctors. I didn’t mean any harm in mentioning the website for Biofreeze but I guess it wasn’t allowed. If someone knows about this, let me know.

    Desertlass, that’s exactly what he told me. I too probably have both. He said he doesn’t want to confirm the fibro until the tests are done but at the same time he doesn’t want me to suffer in pain. I’ll have to check out that site, thank you! And my doctor is listed under Internal Medicine but does specialize in Pain Mgmt. Thank you for the great info!

    So, I’m sorry I couldn’t tell you all more about my first test that I was suppose to have last night but if anyone suffers from terrible headaches, then you’ll understand why I had to cancel. This doctor is almost an hour away from me but if I go right after work, which is best for my schedule, then it takes longer. It took me 2 hours to get there the first time. I thank everyone again for their kind words, prayers & concerns. I promise I’ll pass on any new info I found out from this doctor! And I have to admit that it’s nice to finally find a doctor who doesn’t have pain medicine phobia. I take the oxycontin before bedtime & my pain in the morning has been reduced by at least 75%!

    I hope you’re all doing well & pain free! The temperature on Monday here was in the 50’s, yesterday it dropped below zero & today it snowed. I can’t wait till Spring!!!

    [This Message was Edited on 03/07/2007]
  20. sugarpeach

    sugarpeach New Member

    Glad you clicked with your new Dr. I am also glad your are getting some significant pain relief. Bala Cynwd seems a little far but you never know how desperate you might get so I would like the name and address of the Dr. if possible. Hears to many better days ahead!! Peace- Susan

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