Saturday, April 30, 2016

"What is WRONG With You?"

The quest for answers continues.

I have not been quite "myself" for some time now. Sometimes it's little things. For instance, right now I can't seem to type more than a couple of letters without making a mistake.

Let me give you an expample I will type this without looking at ti and without seeing if i have made any mistakes. II'm so uset to typing an backspacing that mith ith not be able to stop myself form a;lstocorrecting as I type  Yes, autocorrecing is part of what i co natuarally but not every other workd lik this would recire.

...If you think this is just "normal", we'll just have to agree to disagree. I have never been the best at typing, but I can usually type fairly fast with only a few mistakes and auto corrections as I go. After my first round of steroids I found myself being able to type "normally" again. That sounds like a little thing, but it's only one example.

Other examples...word finding. I struggle to find the next word in my sentences. Again, a fairly little thing. But I have found myself being quieter than usual (GASP) sometimes simply because I can't find my next words. That is NOT fun for someone who likes to talk as much as I do!! It's almost like a stutter but instead of stammering on letters it's whole words that won't come out of my mouth (or I come up with wrong words that don't make any sense).

There is a little test you can do to assess how well your frontal lobe is functioning. The frontal lobe is responsible for (among other things) your thoughts, reasoning, and behavior. I had Dwayne give me the test the other day. I passed all but the word finding part.

Do me a favor. Stop reading and set a timer for 60 seconds. Press start and say as many words as you can that begin with the letter S. (Surnames, proper nouns and variations of the same word do not count. So you can't use play and playbill. (What, you didn't think I was going to give you extra S words did you?!) Go ahead, do it now. Leave me a comment to tell me how many words you came up with before you keep reading. Go ahead, I'll wait.

(Play theme from Jeopardy here.) do do do do do do do, do do do do DO dodododododo, do do do do do do do, DO, da do do do do do

How many did you get? I got SIX! And "six" was not one of my words. I re-did the test with the letter M and got...SIX again! I did the test with the letter P the next day and got NINE. Dwayne and Daisy both got 12 in the first 15 seconds! I was thinking of words like "fence" ("s" sound in it and I was looking at our fence), and for M I came up with the word "mizzy-wiggle". I don't know why that one didn't count?

I have headaches almost every day. I am EXTREMELY fatigued at least 1/2 the time. Dwayne and I walked about a block yesterday and I was out of breath. I tried to walk with Daisy the other day and had to tell her to slow down because I literally could NOT keep up with her. I am a long distance triathlete. I've completed two Ironmans, 2 half Ironmans, three 50Ks, 2 stand-alone marathons, and countless "shorter" events, not to mention the training I have done.

Okay...I heard it. SOMEONE reading this just said to themselves "well, maybe you are just tired/overtrained/burned out?" I can assure you I am not overtrained or burned out. I can also assure you I am indeed tired. But it's an unnatural kind of tired, unrelated to activity. Another example, Daisy was trying to take a picture of a prom dress the other day and asked me to hold it up for her. I had to put this flimsy piece of material on the rack because I didn't have the strength to hold it up!! I was lifting heavy weights just a couple of months ago. I LIKE to be active. I LIKE LOVE to run trails and to ride my bike and swim. Okay, I don't LOVE to swim, but I do like it. I don't like not being physically able to do those things. And, it's NOT a matter of sucking it up and just doing it. I'm not lazy, I'm clinically fatigued. It's unrelenting and is not relieved by rest.

So...what's wrong with me? The neurologist says Hashimoto's Encephalopathy. Hashimoto's is an autoimmune condition in which my body makes antibodies that attack my thyroid. In rare cases those antibodies begin to attack the brain as well. The symptoms I've mentioned aren't the only ones I've had and the ones I've had aren't nearly as bad as some people with HE report.

I went to a new doctor Thursday. He's an integrative functional medicine doctor. He agrees I have a steroid responsive encephalopathy. Encephalopathy means a disease in which the functioning of the brain is affected by some agent or condition (such as viral infection or toxins in the blood). He said it's clear I have an encephalopathy that responded to the best anti-inflammatory out there, but he questions whether or not it was caused by Hashimoto's antibodies.

Why does that matter? Well...if it's the antibodies and I focus solely on bringing those down and keeping them down* but that isn't the cause then I haven't solved the bigger issue. (*To be clear, it's highly debated whether or not you can bring thyroid antibodies down and I won't go into it here but I'm of the belief that it is possible to do that.) Because he questions that notion, he is doing a myriad of other tests. He took 10 vials of blood and I have to do a test for metal toxins that requires collecting my urine over 24 hours and sending a sample to a lab for analysis. (GROSS)

I'll have some preliminary results from him in about 3-4 weeks, but the metal testing won't come back for another 4 weeks after that so I have a follow up in 7 weeks with him. In the mean time I'll get my next treatment of steroids next week, and then my third treatment a month later.

Funny story about the doctor visit. Dwayne told the good doctor he'd pay extra if he would tell me my trouble is because of the cat!! The doctor obviously shares in the lack of love for the feline variety of pet because he obliged by taking an extra vial of blood for another test (toxoplasmosis). If that were to come back positive I will have to investigate our bank accounts for a suspicious payment!!

Come on now. What's not to love about this guy!?

Thanks for stopping in. :D

1 comment:

  1. Well, it's hard to be positive after such a difficult-to-process post. Our prayers are with you and I'm glad you have a doctor with a sense of humor.


Don't hold back, tell it like it is....