After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

My "Christmas Wish" Results

My "Christmas Wish" Results

Finally, I have an update as to the feedback I received from the article I was featured in, All She Wants for Christmas is to Find Someone with Matching Symptoms” by Gina Dewink . When Gina and I were discussing the article, we had a private goal of it being shared over 500 times. From Facebook, emails I have received, and further comments it appears we indeed surpassed that!

All thanks to you!


I received so many emails, which I was very appreciative of, from different people who had suggestions or partly similar symptoms. In general, they fell into three categories of suggestions:
  

 The first group were inquiries asking if I had been tested for toxic mold exposure. Apparently constant surroundings can cause a variety of neurological symptoms. And the people who wrote to me had greatly suffered from their exposure. (If you think you might have been exposed, you can easily have your house tested. You most likely also have a genetic marker for having a disposition that does not process mold like everyone else does. For a much more in-depth answer if you are seeking information, feel free to email me; I was graciously given a thorough education).
  

This, I know, I do not have. A variety of factors could eliminate it, as well as my not having the genetic marker that goes with it.

The second category was being tested for Lyme Borrelious (or commonly known as lyme disease). This one is particularly interesting, as in very severe cases it can result in being bedridden. This is not a new suggestion, as I have been tested for it since my illness inception, and retested every few years. However, I have not been tested through the two specific labs several people told me that I needed to be. So, tests kits from thesehave been ordered, and while I had hoped to have them done before the start of the year, my pneumonia-antiobitc treatment put a delay on that… Hopefully should be done in February, and so I will keep you posted.
     

To be honest, while this is interesting, it would represent a piece of the puzzle. Which, absolutely—if we can identify a piece, that’s huge.

The third category: a host of autoimmune / neuromuscular diseases. While there was a variety of suggestions, a very long list I’m not adding here.Suffice it to say that between all of the testing I have endured, either directly or indirectly, I was able to eliminate all but one: Periodic Paralysis.
Periodic Paralysis, in a Twitter sound bite, is an autoimmune disease that causes temporary paralysis when your potassium levels change drastically. Your potassium either drops, goes way high, or, the rarest kind, is when it can both fluctuate up or down. If you are at all familiar with the poet Elisabeth Barring Browning, it is widely suspected that she suffered from this disease. (It’s actually how I came across it years ago, thanks to an afternoon watching an old movie about her. See? You never know where you’ll gain knowledge!)

The reason why it is interesting is because I actually purchased a potassium meter, (yes, they actually do exist), and after testing myself over the course of weeks, daily, when I was and was not particularly symptomatic, found a surprising result: my potassium levels did change with my symptoms. For the most part they went high, though a few times they were low, and we found an arch of it with my symptoms. Otherwise, they were normal. If you’re wondering, we did take steps to eliminate x-factors. Such as, you always had to wait at least 20 minutes after drinking, and 40 minutes after eating, calibrating the machine before each use, and keeping a diary of time of day, etc etc.
 

When after weeks we saw the arch of results, I actually thought we were on to something. At the time, I had both a neurologist and nephrologist (kidney specialist) on my team—the nephrologist being considered one of the top five best in the country. I showed my results to both specialists, and they both dismissed them vehemently. Here’s the reason: since the levels went both up and down, it implies I would have to have the rarest type of Periodic Paralysis. In order to be diagnosed with that, you have to exhibit two out of three criteria: a particular genetic marker, (which I don’t have), a particular heart condition, (which I have only found evidence for this abnormality once, more as a ghost of a trace rather than hard evidence. In recent years it has not been detected at all, so it is considered a wash). Finally you need the abnormal potassium results, (based both on different blood tests over the years and my home test, I do have).
 

Thus I can only conclude one thing: if I do have it, it’s a secondary condition, meaning something else has brought it on. This I really think is likely, as some of the secondary conditions/reactions your supposed to have, I don’t. Regardless, there’s nothing one can do about it, so it’s simply left out there for now. It’s like finding a shoe that fit’s, except your toes are pinched just so…So close, but not a perfect match.

In short, my take away is this: there are so many of us out there that have had to fight for years to find explanations or answers. From all of the letters I read, it was months to years, and everyone of us having to take the lead in researching and finding just the right doctor that answered the puzzle. I admire each of them more than I have words to express. Their determination and strength is something that I will continue to strive to have.

Me, Not My Illness

Me, Not My Illness

One Way to Start the Year -- Out of Order

One Way to Start the Year -- Out of Order