Monday, February 28, 2011

New Symptom...

I had a new unfriendly symptom show up this week. Well, I wouldn't really call it new, just in an unusual different location.

Ok, it sounds weird and stupid, but here goes...

Keep in mind this is involuntary, as I feel like a crazy fool as I am about to type it out.

My throat, mouth and tongue act as though I am about to throw up, movement wise, my tongue comes out of my mouth. As freakish as it sounds, I can imagine it looks that way to. It comes with fatigue, muscle weakness and this really weird cold clammy feeling. I can't make it stop and after ward I can't really function to do anything for a second or two. I don't know if it's mini seizures again. I have seen kids have seizures like that, and I have seen kids just do that involuntarily at TSRHC, but I have never experienced it. I don't like it. It feels terrible, I can't control it, and I don't like feelings that I can't control. Before tonight it was once here or there, like every other day, and tonight it has been a lot.

I had involuntary movements a lot. Muscle twitching, hand movements, head and face, but it had gotten much better in the last few months. I don't like what this is implying, and I don't know if it is from all the new exercise and diet, or what. I don't know if I should tell the doc. If anything, it's not what she'll say that makes me uneasy, it's that I feel like a fool saying it myself, and I don't need to think that someone else is thinking that I am crazy. Sometimes it feels as though I must be crazy with all of this, but the moment the symptoms show up full force, then I remember just how not crazy I am. Sometimes I just wish people could just see what is going on without me having to tell them my crazy symptoms. Like with a broken leg: you see the swelling, you touch it and they jump out of the chair, you take an x-ray and see the evidence... Sometimes I ask God why my experiences could not have been a little more straight forward like that. But I know that my God is bigger than anything I am going through, and just because the doctors don't have a name or face on it doesn't mean that God doesn't have it all under control.


  1. You know, when I was first diagnosed with ACM, it was because the symptoms became huge.
    But I suffered for a long time before that, because I kept thinking that the symptoms were stupid, nothing, or not worth mentioning.
    If I had voiced my little worries sooner, I could have minimized many problems and misdiagnoses that I had. Migraines, depression, and about a dozen other things.
    And I would have suffered less...

    Why NOT tell your doc? It may be nothing, or it may be that one symptom that works like a light bulb going off... they may be able to pinpoint something because of it.
    You should always always always tell your doc if something new starts happening. It could be a sign of things getting worse, better, moving, or nothing at all. If you don't feel comfortable talking to your doctor about it, get a new doc. Bounce around until you find someone that you feel 100% comfortable with.

    <3 you, take care!

  2. You mentioned that you used to have "mini seizures" in the past. I'm not sure what you mean by that, but if you mean an absence seizure (the kind you stare off in space) then it is still as damaging on the brain as a tonic clonic (used to be called grand mal). The only difference is you can see what is happening. If you are driving any seizure equally bad. You shouldn't drive if you are having those symptoms, whether they turn out to be seizures or not. I have no idea if that is what is wrong (I'm not a dr) but I just wanted to bring awareness to seizures/epilepsy. A good site to understand it is

  3. I had staring and myoclonic seizures, but the difference between this event and my old seizures are that I was fully aware of what was going on. I couldn't do anything about it, but I was aware and could remember it afterward. I can't remember my other seizures, nor am I aware of the course they take, be it staring or myoclonic since I've had both. I have a history already of epilepsy, was on Keppra for it. But I haven't had a seizure in over a year, so this new little symptom had me wondering. Because with mito disorders you can get non-purposeful movements as well, so I was really just wishing I knew if it was seizure activity or non-purposeful movements. Thanks for trying to help.

    I think my fear in telling my doctor is not so much her problem, she has been amazing and great and listens to every word I say. It's just that I know what she is going to tell me. I know she is going to tell me that I have to stop exercising, and now that I finally have a grip on my weight loss, I just don't want to hear that right now. But, I will be telling her anyway because the feelings are not going away despite a few days f not doing as much...