I am so far behind...I know. I'm going to give the summary here and spare you the long, rambling details.
I received no answers from the docs I saw in Mobile. They left me completely hanging...I still haven't received the return phone calls that I'm owed or the new appointment that I was promised and it has been two months. Lying here, my life wasting away, being completely ignored. Why yes, I am bitter. Thank you for noticing.
Anyway, I've had a couple of consults and tests with the MDA (that's Muscular Dystrophy Association, if you're new around here) and Nephrology clinics since then. The MDA physician, Dr. V, agreed that
I have Familial HypoKPP. Unfortunately, he does not have any
suggestions for me other than follow the diet and continue to take
potassium. That's what I've been doing and it's no longer
working, but he said that's all I can do. He doesn't want to do genetic
testing since I am uninsured. I'm hoping to someday find a lab that is
willing to follow [Periodic Paralysis International's genetic specialist] Dr. Lehman-Horn's protocol in sending blood to Germany
for testing, but getting any lab that I've ever dealt with around here
to get their OWN stuff correct is a task in itself. Dr. V said his hospital's lab
is doomed to fail in getting it right and was not willing to order them
to do it. At any rate, he said that I have chronic muscular dystrophy and my current situation may or may not be permanent. He advised that I pursue SS disability and Medicaid.
I also saw Nephrology. Dr. F is really something. He seemed truly upset by my condition, and was enthusiastic to help. He ordered several tests to check for metabolic and autoimmune diseases and to determine if my kidneys are wasting potassium. This week, I turned in two days worth of samples and I'm waiting on the
results of that now. He reluctantly prescribed a drug, amiloride, but he is concerned what it will do to me and stressed that the results could be good or could be very bad. He really didn't want to do it because it is so risky, but I told him that I couldn't live like this and was willing to try anything. He gave me strict instructions on what to do while taking it and I have to report back to him via fax in a week with my potassium level.
I am hoping and praying this is my answer...I am in a bad place in life. I am very, very ill. I cannot take care of myself and I have no income. I honestly don't know what in the world is going to happen to
me, but I'm doing my best to hang on to hope with all that I have.
This is the super short version of the past 3.5 months. You're welcome. :-)
And thank you for your thoughts and prayers.