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Thread: My new dr. at Cleveland Clinic

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    Default My new dr. at Cleveland Clinic

    I am now seeing Dr. Carol Langford, since my other dr. retired from up there and I must say she is wonderful. I have only seen her one time but she stays on top of things. When I went up there, she had me do another urine test and when she got the results she called me and want me to see a uroglogist concerning my bladder from the cytoxin use. Then she ordered a bone denisity test since long term steroid use. I had that done last week. She just got the results yesterday and called me,but I had missed her call so she called me first thing this morning and wants me to see a endrocrinlogist ( sp) because my bones are bad and she was explaining how she perfer I get a shot instead of pills because of my history of esphogus and stomach issues.I am so impressed with her that she took the time to really know my history and called me with a problem. She also said my calcium was 2 points above normal and she is going to keep in eye on that. If there is anyone that is looking for a good dr. I would HIGHLY recommend her.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    That is awesome!
    I am so glad you have someone that you like and knows so much about this disease.
    Did she do a 25 hydroxy D3 test?
    There is a study that shows 10 prunes per day reverses osteoporosis.
    I give my mom boron instead because she can't have that much potassium.

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    I had great luck with 1500 mg of calcium per day and 5000mg of Vitamin D. My bones improved significantly. Of course the third thing I did was walk almost every day. My asthma has been preventing that for the past three years, so things have deteriorated. As soon as our weather allows it, I hope to start walking again. Starting over is a bit frustrating. Back to 10 minutes a day, rather than the 90 minutes I used to do. It wil be starting over again...but hopefully I will be able to get back into shape again.

    Glad you are having a good experience with Cleveland Clinic. My bad experience with them continues. I asked for my records on Oct. 10. They just arrived 2 days ago....and they were FAR from complete. They indicate what tests I had...but, except for the blood tests, there were no actual results. Nothing about my PFT tests, no narrative, let alone a CD of my CT scan as requested. What good is that? And it cost me $35 besides. Grrrrr....
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    I'm glad you saw Dr. Langford, Deb, and that you are happy with her. She is up there as one of the very best in terms of reputation as an excellent WG doc. The bureaucratic problems that Jacquie keeps running into are very unfortunate and shouldn't be occurring at a world class facility like that, or any facility for that manner. It sounds like they really need to get their act together so that their customer service matches the excellence of many of their doctors.
    Anne, dx'ed April 2011

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    I'm so glad that you have a doctor that will stay on top of things and that you like her. It is very important that our specialist keep an eye on our test results. I'm sorry that you are having bone loss, but it seems that she will make sure you get the right tx for it. I think sometimes doctors get to many patients and then the patients gets short changed. I have been going to CC for over 4yrs now and have never had any problems getting copies of my reports or cat scans cds, I have always found that their customer service is very good. Deb wishing you all the best with your new doctor.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Jacquie,its hard to believe that you are still having problems with them and they should not have charged you anything especially if you had the tests done there. You can sign up to get your reports online from there. I would be calling them up a raising H#@% !! She wants me to see an endrocrinogolist (SP ?) but there are not good ones here so I may look into the ones she suggested up there. I just don't look forward driving to Cleveland in the middle of winter.
    Mrtmeo..the test I had was called a Dexa Bone Density Axial Skeleton..I don't know if its the same thing ? But it states that L1 - L4 bone mineral density has been decreasing at a rapid rate of -9.1% per year !!! YIKES...that doesn't sound good. We talked about the prune thing before and that's not for me. I would be in the bathroom with my cell phone and laptop all day !

    Thx ya'll for your comments, I really just wanted to put the word out there that she is one of the good ones in case there are still people needing one and are able to go there.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Hi Debra,
    I was asking if you had vitamin D test done which is the 25 hydroxy.

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    Quote Originally Posted by mrtmeo View Post
    Hi Debra,
    I was asking if you had vitamin D test done which is the 25 hydroxy.
    Yea they test my Vit.D level every other month and it was 55 last week. I take 2000 iu every day.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Debra C View Post
    Yea they test my Vit.D level every other month and it was 55 last week. I take 2000 iu every day.
    Is that ng/mL or nmol/L?

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    Quote Originally Posted by mrtmeo View Post
    Is that ng/mL or nmol/L?
    It was ng/mL
    Life isn't about how you survive the storm, but how to dance in the rain !

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