WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Monday, April 28, 2014

Not Predictable

One of the things I see that are common between both Mast and Mito- they are not predictable.

With Mito you can have a genetic mutation for Leighs, or you can findings of a depletion on biopsy and do remarkably well, or on the other hand the disease can rapidly progress. Same with Mast, some patients with have extreme symptoms that will suddenly go into "remission" or "settle down", while others have a constant set of symptoms.

That is what makes both so incredibly difficult. Even with the gold star laboratory proof of either disease, there really isn't a prognosis.

Some with no gene found or little laboratory evidence with Mito will face a terminal progression. While someone with a proven mutation might lead life with only a milder set of symptoms.

So if we cannot depend on laboratory findings with Mast or Mito, then we depend on what is found clinically to predict progression? Nope. That doesn't work well either. I have met more and more patients who like Abby have had years of really symptomatic health where everyone thought for sure the prognosis was bad. However, like Abby many suddenly stabilize for years at a time. Abby had years of being pretty normal, and that gives us hope that we will find something that will "reset" her bodies current path onto a better path. Patience.

The issue I think is that for the first few years of data gathering the only patients identified were the "severe" presentations. So all the medical guidelines were based on those with severe forms of Mito. With Mast(MCAS), it is just too early, they still don't really know enough yet. It does seem they are picking up on more of the milder presentations earlier in developing their guidelines which is great, it will help those with both milder and more severe disease processes down the line. With the exception of Abby's Mito Specialist every Dr. that see's Abby looks up what a Mito depletion is, and the books say she should be much sicker or dead. Then they question whether she has a Mito Depletion at all. Not Predictable. When it comes to Mast? She is "too" sick to have Mast(MCAS), or maybe not? Again, Not Predictable.

Time and time again every time Abby hits a hiccup and is struggling, in the back of my mind I wonder "is this it?" "Is this what progression looks like?" Then in her remarkable Abby way, her body bounces back and whatever symptoms I was worried about either aren't that big of deal, or simply fade away.

Spring has just been tough. Her "allergy bucket" is overflowing. Which just makes her more likely to show symptoms more frequently. Which leaves me worrying more then I should.

For us what makes this journey difficult is that it is NOT Predictable. What gives us so much hope is that it is NOT predictable.

There is nothing set in stone. There are no absolutes. In a few weeks when the Spring pollen count drops again, and Abby has an easier time of things it will reinforce what I already know. You have to see your glass as half full on this journey, because statistically, the odds are in your favor.


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