Cleveland Clinic visit

Discussion in 'The Watercooler' started by flutterbee, Jan 10, 2009.

  1. flutterbee

    flutterbee Guest

    So, I've been rolling the visit around in my mind since yesterday. I had no sleep before I went.

    I really like the doctor. She read my 8 1/2 page patient report before she even came in the room. She asked a lot of pointed questions and did a thorough physical exam.

    She said I definitely have a serious case of fibromyalgia, but she doesn't think that's all I have going on. Namely, because I respond to steroids and fibro doesn't respond to steroids.

    She was appalled that the eye doctor put me on restasis without doing a tear test. And she was appalled that an optometrist could write an rx. My regular eye doctor is an ophthalmologist, but he doesn't take my current insurance. So, I have an appointment with my regular eye doctor Thursday for a tear test - it measures tear production or something. She said she can tell by the numbers from that test whether I have Sjogren's Syndrome. She said a salivary gland biopsy is worthless, so I'm glad I haven't had that done already. That suprised me, too, because from what I've researched about Sjogren's (and from reputable sites - Mayo, Johns Hopkisn, Sjogren's website) is that a salivary gland biopsy is like the last step in the diagnosis process.

    Re: the pain in my lower back and hip that I've had since childhood, she said it's chronic pain. I didn't think until later to ask what would cause the chronic pain. So, I need to talk to her about that.

    She said she thinks the heart disease is genetic. I've had doctors tell me that and doctors tell me that I don't have enough of a family history for it to be genetic. She's basing it on family history - more of extended family, my grandfather and uncle - of heart disease. Now I, being the logical thinker that I am, don't know that I buy that. My grandfather had a quadruple bypass in his 60's (no heart attack) and he was a 4 pack a day smoker for 50 years. My uncle had a minor heart attack at 41 with one stent and he was a smoker, overweight, unhealthy diet, an alcoholic and a drug abuser. I think if they had that gene then they would have been sick sooner with more severe disease. Like me. So, I don't think I buy the genetic cause in my case. My grandfather and uncle had/have lifestyle reasons for their heart disease.

    I'm on neurontin for fibro and neuropathic pain. Just started it last night and I slept 16 hours in one shot. :faint: Next week it's 2 a day and the third week and thereafter it's 3 a day. I hope I get over the sedation from it. She told me she doesn't want me using NSAID's for first line defense because of my heart. Which is what I kept asking my doctors about in the first place.

    In the meantime, I have nothing for acute pain. My doctor called in tramadol which did nothing and made me feel stoned. I threw them out. My insurance company won't pay for the lidocaine patches. They said it's used for neuropathic pain. Well, duh. That's what the neurontin was prescribed for. They will, however, pay for ER visits if I have to go because of extreme pain. Save a penny, spend a buck.

    From being in the car most of the day yesterday and all the walking around, my pain level was easily at an 8 or better today. I finally called my doctor's office at 4:30 and told them I needed something. Anything. I didn't care what.

    They called in toradol. An NSAID. Bad for my heart, high risk of serious GI bleed and makes me sleep. It amazes me that they'll rx something with those risks, but won't give me vicodin - with no side effects on me - when they said they knew I wasn't abusing it. Besides the risks with the toradol, it makes me sleep. Isn't the whole point of pain mgmt so that you can be functional?

    So, that's frustrating. The toradol does help immensely after a few days. But, I'm really not functional at all while on it.

    The doctor at the Cleveland Clinic said she was going to review all of my records and that if I don't hear from her by Friday next week, to call her secretary. I've never had that happen before. She said if she needs more tests I can have them done locally, rather than trekking up there all the time.

    I do like the doctor. Just still have a lot of questions. I'm making a list of things I want to talk to her about further.
  2. Hound dog

    Hound dog Nana's are Beautiful

    Sounds like a good visit, for the first one. At least she read the report you gave her and acknowledges you obviously have something else going on, and is willing to do the tear test for you. Plus she plans to go over your records again, which is always a plus. She most likely did a quick read over before seeing you and wants to get more in depth with it. You never know, her opinions about the heart disease may change after that.

    I'm also surprised an optomotrist was able to write a script. Never heard of one doing so. hmmm Then again, I don't recall a need for it either.

    Make your list and be sure to ask your questions. You've always got good questions.

    All in all, sound like a good visit to me. :)

  3. Kjs

    Kjs Guest

    wow. What a visit. Must take a bit to take it all in. Seems like she gave you a lot of information. that's a good thing.
  4. Nancy

    Nancy Well-Known Member Staff Member


    I'm fortunate that the Cleveland Clinic is about a 30 minute drive for me. Most of our doctors are from there. My easy child had complicated ear surgery from an otolarynologist there over 11 years ago and we still go back for follow up visits. They always send me home with copies of my results or send me a follow up letter. We just changed insurance plans and went into a PPO to lower our outrageous premium. But before I did that I made sure our Cleveland Clinic doctors were in the network.

    It sounds like this dr was very thorough and I hope you get some answers. Dealing with chronic pain is awful and I hope she can address that issue.

  5. ML

    ML Guest

    It's a good start. I am hoping for continued understanding and illumination. And less pain!
  6. klmno

    klmno Active Member

    I really hope this leads to some answers for you and some wellness, or at least pain relief. I'm glad you like her- it sounds pretty good that she's willing to take the time to think over each possibility and discuss them all with you.
  7. Heather,

    This does sound like a good first visit. Health care is so fragmented this days with so many specialists who only "handle their area". This has been a real frustration for us managing our difficult child's complicated health needs. Yours are also complicated and it is so important to have one doctor who coordinates the entire medical team, who understands all of the issues, and doesn't pass along responsibility.

    difficult child took neurontin for many years. When it works, it works really well. His need for it diminished , so we discontinued its use because it made him a little groggy and it was difficult for him to stay alert in class.

    Pain management is a very complicated area. I feel sorry for many of the pain docs my clients see because the docs are "damned if they do and damned if they don't". Here in our state they get heavy observation from the authorities. If it is perceived that they are dispensing too many drugs they will be investigated. One doctor, who I really believe is an excellent one, had his license yanked two months ago because of a bad outcome with a patient. Now many of my clients are scrambling to find another doctor - and the choices are few.

    I think that one of the most important quality in a doctor is the ability to listen. It sounds like this new doctor is listening to you. Hang in there, this may take a little time. It will definitely be worth the effort.
  8. 4sumrzn

    4sumrzn New Member

    Sounds like, all in all, a very good start. Hopefully this is the beginning of answers & much relief for you! Sending thoughts & prayers your way.
  9. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Seems like a fairly good visit. About the eye doctor. My optometrist has written scripts for me before.

    I just found out the other day that the Cleveland Clinic is associated with Cape How bout that! I think it is the heart part.
  10. totoro

    totoro Mom? What's a GFG?

    It does sound like a good start. it is a forward step.
    Make that list and keep moving forward!!! This just might be a good year for you! Here's hoping?
  11. gcvmom

    gcvmom Here we go again!

    Well, I hope this is the beginning of a real solution for you! Sure sounds like you've found a good doctor, and one who will work hard for you to get some answers.

  12. TerryJ2

    TerryJ2 Well-Known Member

    Definitely a good start!
    Interesting that you respond to steroids. You were tested for lupus some time ago, right?
  13. KTMom91

    KTMom91 Well-Known Member

    Sounds like it was a positive visit!
  14. Star*

    Star* call 911

    OMG you actually GOT some quality SLEEP?????????

    I'm happy to hear that you don't sound discouraged. I hope this woman is able to keep going until she finds the problems that have plagued you for so long.

    I was impressed that she took the time to read your 8 page patient report. THEN armed with that knowledge asked good questions.

    Sounds like you have a keeper in the medical field.

  15. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm glad you like the doctor and that she is taking things seriously. I hope she is able to find out exactly what is going. Hugs.
  16. susiestar

    susiestar Roll With It

    I am so HAPPY that your visit went well and the doctor is responsive. You may need to call the doctor at Cleveland Clinic about the chronic pain and treatment for it. When you finally find a doctor and they LISTEN and RESPOND it feels amazing!

    I am surprised she put you on neurontin and not lyrica, but that may be because the side effect profile or the heart issues. Lyrica is the "next gen" of neurontin according to my rheumy, but I am glad you are getting some relief and sleep.

    ASK the doctor at Cleveland for a scrip for the pain. The pain level is so draining when it is that high (I know how horrible that is, esp when you don't have anything for the relief.)

    She can mail scrips to you for pain medications. You may want to ask about other things, but it sounds like you have a pretty good start.

    Gentle hugs,

  17. flutterbee

    flutterbee Guest

    Susie - I asked for neurontin because of the side effect profile. Besides, the insurance co would make me try it first anyway. I told her that my doctor had just rx'd tramadol and it was worthless and she said she doesn't like using those kinds of medications for pain control. You know, pain medications.

    I don't know how good I feel about this really. I did like the doctor, but I'm not so confident that she's not going to give up. Maybe I'm afraid to get my hopes up, but it's just a feeling.

    Just like I *knew* for years before my heart attack that something was seriously wrong and just like I *knew* that the allergic reaction I was having was from the Plavix even though I had been put on several new medications at the same time, I *know* that I have an inflammatory rheumatic condition. And I'm not going to stop until I get treatment. I let doctors blow me off in the past and I almost died. I'm not doing it again. I know my body and I'm trusting my instincts from now on.
  18. susiestar

    susiestar Roll With It

    It is excellent that you trust your instincts about your body. I hope that this doctor won't give up. But if this doctor does give up for some reason, then we will just have to find another doctor for you!

    Gentle hugs, sweetie, I know it is scary to have to deal with this stuff.
  19. SearchingForRainbows

    SearchingForRainbows Active Member


    I'm glad your visit at the Cleveland Clinic went well and you like the doctor who saw you. From what you wrote, she definitely sounds like a good doctor who will take the time to get to the bottom of your health problems. However, I can understand why you're not getting your hopes up too high.

    You're a very strong, intelligent woman. I hope this doctor doesn't give up on you too. If she does, like Susie said, you WILL find another doctor. I'm glad that you know you are too important to give up on finding the right diag and treatment. However, I'm thinking positively and praying that this doctor will be the one to finally give you the help you need and deserve...

    I'm glad you finally got some quality sleep!!! Hang in there. There IS an answer. I'm just sorry it's taking so long to find... As always, you're in my thoughts and prayers... WFEN
  20. Shari

    Shari IsItFridayYet?

    Do you have another doctor in mind if this one does give up? Can you go ahead and get on the waiting list to get in, so if you're right, you won't have to wait as long to see the next one?

    I so hope this goes well for you.