• Checking in!

    Posted by Ashley on November 23, 2021 at 7:36 am

    Good morning!

    Sorry I was absent last week. I had some issues with my IVIG orders and it took the week to get everything straightened out.

    Have you had a last-minute issue come up with your treatment before?

    I received a call last Friday morning at work that I had to have another appointment with my neurologist before I could get my IVIG. My neurologist recently moved to Cleveland Clinic so getting a hold of him was not the easiest, as he also travels quite frequently.

    After the call on Friday, I was in a complete panic because I was supposed to have IVIG on Tuesday and Wednesday. The panic caused my myasthenia to flare (of course), and I spent the majority of the week with heavy legs. I also tripped and fell and had many near misses at work because my feet “weren’t listening” to my brain telling them to move, or they weren’t able to move as quickly as I needed to at work.

    Have you guys ever had this issue?

    It happens to me every so often but has never been as bad as it was.

    I was worried that I wouldn’t be able to get an appointment with my neurologist, especially on a two-day notice. Luckily he was able to fit me in, although I had to delay my IVIG a day.

    I had planned a short trip on Thursday to see my favorite band, The Brothers Osborne, in Richmond which is a two-hour drive. I didn’t want to miss the concert as I had pretty good seats and had already reserved a room to stay the night there. So I ended up getting my IVIG and immediately rushed to Richmond, and barely got there in time for the concert to start.

    Of course, I knew I was going to pay for not spending my IVIG night resting as I typically do. I spent a good majority of the weekend sleeping, but am feeling better now!

    How are you guys doing?

    Is everyone else’s treatment going well?

     

    alex-kahn replied 2 years, 3 months ago 3 Members · 5 Replies
  • 5 Replies
  • alex-kahn

    Member
    November 25, 2021 at 8:20 am

    All
    Have a Happy Thanksgiving

    • alex-kahn

      Member
      November 25, 2021 at 8:36 am

      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

      • price-wooldridge

        Member
        November 28, 2021 at 9:47 am

        @alexkahn I agree with Ashley, that perhaps your daughter should look into claiming disability. It sounds from your post that she is unable to work due to her medical condition, and I know many LEMS patients who receive disability. I’m at a bit of a loss on insurance too, because availability and coverage is so specific to the individual and their circumstances. I would think she should reach out to an appropriate state agency were she lives to discover options.

  • Ashley

    Member
    November 26, 2021 at 7:54 am

    Hey @alexkahn

    Thanks for sharing with us about your daughter! I’m sorry to hear that she got a divorce and isn’t working, that can definitely be tough to navigate. Honestly, I don’t know much about the insurance end of things, I have health insurance through my employer. Is she able to try to get approved for disability?

    Hopefully someone else on the forum may have a better answer/suggestion for you.

     

  • alex-kahn

    Member
    November 28, 2021 at 8:21 pm

    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.

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