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  1. Thread: Ampyra (4 AP)

    by LFC
    Replies
    11
    Views
    12,834

    Does your insurance pay for the Ampyra? My son...

    Does your insurance pay for the Ampyra? My son took the compounded 4AP but stopped a couple of years ago. He was hoping to take Ampyra, but his insurance company refused to pay for it off label.
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    2,534

    Darkeyed daisy, thank you so much for the link to...

    Darkeyed daisy, thank you so much for the link to those articles. They are just what I was looking for. I will pass them on to my son. Thanks again!
  3. Replies
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    2,534

    Thank you for your reply. He has what he...

    Thank you for your reply. He has what he describes as a "burning, zinging" type pain that radiates from the left side of his abdomen clear across it. I can tell when it is extremely bad, as he...
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    Pain management doc in CA

    My son is looking for a pain management doctor that understands central pain and SCI. We are in northern CA and I'm hoping someone has the name of a good doctor. Thank you in advance.
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    2,534

    Central pain question

    My son suffered a C 2/3 SCI 9 years ago and is very incomplete. He was doing well up until a few years ago when he started getting central pain across his abdominal area. It started out in a small...
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    1,424

    Looking For Long Island Pain Specialist

    I'm hoping someone might know of a good pain specialist in Long Island. My son moved there from CA for a new job and the move itself has really aggravated his central pain, and he is extremely...
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    25,998

    Casper, please check your private messages!

    Casper, please check your private messages!
  8. Replies
    59
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    15,082

    I am writing this as a mother of a son with a C...

    I am writing this as a mother of a son with a C 2/3 injury, which occurred in a wrestling accident. I can so clearly remember him lying in the ICU, tubes everywhere imaginable, unable to perform the...
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    1,565

    This is such a sad situation. The accident was...

    This is such a sad situation. The accident was the result of the driver being distracted by her cell phone. One mistake and Taylor's life is changed forever.
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    Dr Young- stem cell research?

    Dr. Young, my son is writing a paper on stem cells and would like to find a company that is engaged in promising research. I was reading an article about stem cell research, but it never mentioned...
  11. Replies
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    5,553

    Does that mean they didn't find the results of...

    Does that mean they didn't find the results of the first phase three trial reliable? How long will another phase three trial take, and if the results are to the FDA's satisfaction, will approval...
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    5,553

    I am wondering when the FDA will approve Acorda's...

    I am wondering when the FDA will approve Acorda's Fampridine? Has anyone heard anything more about it?

    Thanks!
  13. Thread: Dr. Young - 4AP

    by LFC
    Replies
    3
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    1,433

    Dr. Young - 4AP

    Dr. Young, I was wondering if it seems likely that Accorda will receive FDA approval for 4-AP, and if so, when? Does the FDA move as slowly as other government agencies? My son currently takes it...
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    That is pretty amazing that Dr. McDonald thinks...

    That is pretty amazing that Dr. McDonald thinks Beckman will make a complete recovery. I wonder what he considers a "complete recovery."
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    Trish, I am so sorry to hear about your friend's...

    Trish, I am so sorry to hear about your friend's son. What a rotten deal SCI is! My son did his rehab at Santa Clara Valley Medical Center. (He had a C2/3 injury) He was originally in a rehab...
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    83,444

    Jenet, by any chance did your son do his initial...

    Jenet, by any chance did your son do his initial rehab at SCVMC? If so, I think my son was there during the same time. I am so happy to hear how well Derek has done. That is wonderful news! I...
  17. Bruce, what an amazing video! Thanks for sharing...

    Bruce, what an amazing video! Thanks for sharing it.
  18. Replies
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    1,450

    Gosh, I didn't realize the surgery would be so...

    Gosh, I didn't realize the surgery would be so involved. My son's scar is rather big too, and seems to be connected to something (esophagus?) so that when he swallows it moves and he can feel it as...
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    1Deltagirl, my son was there for a total of 10...

    1Deltagirl, my son was there for a total of 10 weeks. He was in RTC (Rehab Trauma Center - it was like an ICU) for a little over 4 weeks, and then spent the rest of the time downstairs in the actual...
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    1Deltagirl, I am so sorry to read about your...

    1Deltagirl,

    I am so sorry to read about your dad. You are smart to be asking questions, and lucky to have found Carecure this early.

    As for Santa Clara Valley Med Center - my son did his rehab...
  21. Thread: Tumor and SCI

    by LFC
    Replies
    17
    Views
    6,533

    Thank you, Dr Young, for the information. I was...

    Thank you, Dr Young, for the information. I was wondering if Decadron causes psychosis? In the last couple of days many of his comments and conversations have not been rooted in reality. He has...
  22. Thread: Tumor and SCI

    by LFC
    Replies
    17
    Views
    6,533

    Question for SCI nurse (KLD)

    KLD, I just finished talking to my friend. Her father is back at the rehab hospital. Apparently he now has diabetes, which seems to have been brought on after they started giving him Decadron....
  23. Thread: Tumor and SCI

    by LFC
    Replies
    17
    Views
    6,533

    KlD, thank you so much for your reply. He is not...

    KlD, thank you so much for your reply. He is not a vet, unfortunately. He has very limited resources and an unwillingness to be far from his wife. I am sure I irritated the staff at the meeting...
  24. Thread: Tumor and SCI

    by LFC
    Replies
    17
    Views
    6,533

    I went to the "team meeting" today for my...

    I went to the "team meeting" today for my friend's father and walked away feeling disillusioned. He is at a local rehab facility, which is nothing like the Model SCI center my son was at. It is new...
  25. Thread: Tumor and SCI

    by LFC
    Replies
    17
    Views
    6,533

    KLE, Leif and SoFla, thank you so much for your...

    KLE, Leif and SoFla, thank you so much for your replies. I really appreciate them. I talked with my friend and she said the doctor mentioned lymphoma. She has had to stay with her mother round the...
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