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Thread: Checking in after Cleveland Clinic visit

  1. #11
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    Congratulations to you and your hubby, Jana. Hope you have many more, and that they're healthy!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  2. #12
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    OUCH !!! That's sounds horrible to be shocked and stabbed. And on your anniversary ! Did the dr. ever call you back to explain things ?
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #13
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    Happy Anniversary Jana. Sorry for the test pain.
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  4. #14
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    I'm going to my 2nd EMG test in the last 6 mos my Neuro wants to see any changes ( for the better or worse) and to see if they can pinpoint the soul of my knee and foot pain bi- laterally and not due to neuropathy


    Sent from my iPhone using Tapatalk

  5. #15
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    All the best to you Tr1957, hopefully it won't be as intense this time. I heard back from the Neurologist, about what kind of biopsy she would take and it would be of the skin. She said that she would be looking for small fiber neuropathy in my feet. The office called me on Friday to setup some cervical spine x-rays before I have my RTX infusion on the 29th. I ask if I would then have an apt with the Neurologist that day and they said we would set that up later. I guess I will just be patient and wait to see what all of it adds up to.
    Jana


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


  6. #16
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    Sorry you are having to play the wait and see game,Jana. Good luck with the x-rays
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #17
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    I am going to be at CC tomorrow 6/29 for a RTX infusion. Is there anyone else going to be at the clinic on Monday 6/29 for appts or infusions? If so I'll there from 8-4, send me a pm, it would be nice to meet up.
    Jana


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


  8. #18
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    I won't be there then but I am going to see Dr. Langford on July 8th at 1:30 if anyone will be there then. Sorry to miss you again Jana but hope the infusion goes well....Good luck
    Life isn't about how you survive the storm, but how to dance in the rain !

  9. #19
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    Well I got thru another infusion on 6/29. They gave me IV Solemedral, Tylenol and 780 dose of RTX. They told me that they were just going to give me the one dose at this time and make it an extra strong one. I was so shaky and afterwards, so I've been in hibernation since then. I did get a some coughing, low grade fever, aches and nausea, so took the Benadryl and Tylenol every four hours for about 24hrs. I was suppose to make a follow up appt. with Villa-Forte in two weeks and then I get a message that they scheduled another Tx on Tuesday, I tried to call on Friday and could not get any answer, so cancelled it online, until I talk to someone about this. Meanwhile, the Neuro had ordered a Cervical x-ray and I have a mess to deal with there now, from all the steroid usage over 5 yrs. I am so sick and tired of all the complications of this ugly, crappy, totally unpredictable disease. I had gotten down to 9mg of Preds and had to take it back to ten because of the joint pain, maybe I can try again soon. Just looking for a break somewhere in all this.
    Jana


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


  10. #20
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    Well, not that I like it just wanted you to know I read it and am hoping some good comes your way soon. I wonder if Andrew can come up with another word to reply, as in "okay" or "thinking of you" and of course "following" then we don't have to like something that is not necessarily likable.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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