Wednesday, November 7, 2012

November Consult in Jackson

I went to see my Nephrologist/Internal Medicine specialist yesterday at University of Mississippi Medical Center in Jackson. Dr. F is a gem, I consider myself very lucky to have him in my corner.

He admits to being baffled by my condition, but we had a laugh about it and it made me grateful that he hasn't given up on me in spite of not seeing the improvement we had hoped for. It's funny how I always go in there wanting to crawl into a corner and cry, but I leave feeling better even though things haven't improved. He told me he believes in his heart that I will be well again, and I appreciate that. I've been very down about my condition, to say the least, and it helps to know that one of my doctors has faith in my recovery.

I will be starting a trial of Diamox in addition to all the other meds I'm on. This drug works for some patients, but makes things worse for others. Worse is dangerous, but of course I won't know which category I fall into unless I try it. People with HKPP have no choice but to be Guinea pigs, because the treatment and symptoms vary so much.

Wish me luck, and I'll keep you posted.

3 comments:

  1. Woke up Monday with 0 strength. Managed to get to edge of bed and fell out. I literally couldn't move. Took 6 firefighters to get me off floor. I have muscle strength back now after a ton of potassium orally and via IV, my potassium level was 2.2 and normal is like 4.4, lucky my heart didn't stop beating. Kept me all day Monday and until about 5pm Tuesday, wasn't allowed to get up at all. They took blood 17 times and want me to come back for more over the following weeks "profound weakness with severe hypokalemia suspected due to hypokalemic periodic paralysis".

    Another joins the ranks :(

    ReplyDelete
  2. Hi Ryan, thanks for writing. I'm so sorry to hear you're having HKPP episodes. Your potassium is very low. I hope your docs can figure out whether or not you have primary and secondary HKPP so they can treat you properly.

    Let me know if I can give you any information. I hope you're feeling much better soon!

    ReplyDelete
    Replies
    1. Primary OR secondary...not and. Sorry for the typo.

      Delete