Forum Replies Created

  • alex kahn

    Member
    December 8, 2021 at 5:47 pm in reply to: Expanding global access for Firdapse

    Let’s hope some pharmacy company can come up with something new.

  • alex kahn

    Member
    November 28, 2021 at 8:21 pm in reply to: Checking in!

    Thanks
    I have talked to my congressional representative and he has not been able to help.
    I will keep trying to see if we can get insurance and let you know if I do.

    Thanks again for your help and concern.

  • alex kahn

    Member
    November 25, 2021 at 8:20 am in reply to: Checking in!

    All
    Have a Happy Thanksgiving

    • alex kahn

      Member
      November 25, 2021 at 8:36 am in reply to: Checking in!

      My daughter has the same problems. Stress is one of the biggest problem. She was told to try acupuncture. She lives in Virginia and has been going to John Hopkins in Balt. Md.
      Her husband of 20 years has decided to move on and get a divorce. He is plaining to drop the insurance. She was a nurse and has not worked for over 10 years and therefore can not get financial help from the state. She has been checking the insurance through the Affordable Care Act. She has found out that the only way she can continue to go out of state is to self pay. Do you have any ideas on the insurance end?

      Thanks

  • alex kahn

    Member
    July 1, 2021 at 6:59 am in reply to: Someone has a birthday coming up!

    I see in the future there are may more Happy Birthdays ahead.

  • alex kahn

    Member
    June 29, 2021 at 8:44 pm in reply to: Someone has a birthday coming up!

    Have a VERRY HAPPY BIRTHDAY

  • alex kahn

    Member
    April 28, 2021 at 12:40 pm in reply to: My Week With LEMS, Muscle Cramps

    Price,
    Do you think LEMS is related to you being a diabetic? My daughter is 55 years old and has been a diabetic
    since 11. She is a type one. She had surgery on her leg and right after that she got LEMS. We go to John Hopkins Hospital in Baltimore and she is starting to get infection for LEM.

  • alex kahn

    Member
    March 20, 2021 at 10:50 pm in reply to: There is light at the end of the tunnel!

    Thanks Ashley

  • alex kahn

    Member
    March 19, 2021 at 3:13 pm in reply to: There is light at the end of the tunnel!

    My daughter has had diabetics for 45 years and now has LEMS. I have a question. Her blood pressure when laying down is 140 over 85 and standing up it is 70 over 50. Is this something that is related to LEMS and how can it be managed?
    Thanks

  • alex kahn

    Member
    April 6, 2021 at 6:27 am in reply to: Working with LEMS

    Thank you

  • alex kahn

    Member
    April 2, 2021 at 4:52 pm in reply to: Working with LEMS

    My daughter has LEMS as well as diabetes type 1. She is 55 years old and lives in Virginia. She has tried to get disability insurance but is unable to because the state of Virginia says you have to have worked in the last ten year. If you can give us any ideas on how to get disability insurance we would appreciate it.
    Thank you,