Sunday, May 6, 2012

About Me

My symptoms began at age 12. I was misdiagnosed and untreated until I was nearly 21 years old. December 1998, I was diagnosed with Periodic Paralysis with the possibility of Renal Tubular Acidosis. Although I do suffer from Nephrolithisis, it was later clinically confirmed that I have Familial (Primary) Hypokalemic Periodic Paralysis. I am a "textbook" case with the exception that my condition has progressed more quickly than average. My MD physician considers me permanently weak in my 30's. I am never well-functioning as I do not fully recover between attacks.

Finding proper medical care has been next to impossible and a terrible experience over the years. I am thankful to finally have the attention of the Muscular Dystrophy Association and a team of physicians 3.5 hours away in Jackson, Mississippi. I am still looking for a local physician that will work with them and me to provide acute care and maintenance. No luck so far.

My mother and her sister have some of the symptoms, but have not pursued a diagnosis and are uninvolved in my care. I do not have children and can't have them. In spite of that, I hope to be able to have genetic testing done someday. As of today, I do not have the resources to do so.

I strive to bring awareness so that future patients don't endure the hardship that I have. The physical and emotional effects of this disease are beyond expression, especially when support is so hard to come by. It should not be this way, and I intend to make Periodic Paralysis not only known, but well understood.

Thank you for being here.

5 comments:

  1. Have you considered becoming a member of the Periodic Paralysis Association? Dr. Lehmenn-Horn does free DNA testing for PPA members. What are your thoughts on that?

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  2. I've been a member for years. I just haven't been able to get my blood to him for testing...no cooperative labs around here. I hope to somehow be able to attend the conference in 2013.

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  3. um... I have a question... I'm looking for a way to bring this up to my doctors without sounding like a hypocondricte, which they already believe I am. i'm in a wheelchair already and do not recover between attacks not completely anyways. It's my left leg but when I have an attack it floods over to my right leg. I just want to know what it feels like when you have an attack... I feel like I'm being pulled threw the ground like even after meeting the ground I still feel like i'm falling. What kind of doctor will do genetic testing? I need HELP

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  4. What you are describing sounds like depolarization, definitely. Your muscles will become very heavy until you cannot lift them at all. I personally have more paralysis on my left side than my right, but it can involve the entire body. A full blown episode for me has started in my feet and rose up my legs all the way up to my head...couldn't move at all but was fully awake. Other episodes start in my head, arms, neck, back...it is very unpredictable and there are no absolutes. That's one reason why it is so hard to diagnose. I highly recommend the information on HKPP.org, especially the FAQ's...find a doc who is willing to read about the condition and take it seriously. There is a Physician's Information Sheet on the site also that explains a lot of the medical mumbo-jumbo. Mostly, the doc has to understand that potassium levels may remain in normal range but episodes can be frequent and dangerous in spite of that. If you are in the United States, let me know your zip code and I will find the nearest clinic who can address your condition as well as genetic testing. In the meantime, feel free to join HKPP.org and PeriodicParalysis.org, as there is an email support group that is very informative. Also you can find many of us on Facebook on the Hypokalemic Periodic Paralysis Network support group. These resources have saved my life. Feel free to email me with your zip code and anything else you want to tell me, and I'll see if I can point you in the right direction doctor-wise. ugottafriend4life@gmail.com

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  5. I emailed you... darthanya.rain@yahoo.com my blog is http://rainsdeliriums.blogspot.com

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