My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV
Day by Day with a Movement DisorderPosted on by DB4
Well, I was hoping to wait until I had something definite to add, but it looks like that’s not going to happen any time soon. Since I’ve written last I’ve had two more sets of liver enzyme tests with varying results, but still high. I’ve been to the Endocrinologist, and he’s run all the thyroid tests again and done an ultrasound of my thyroid. He is satisfied that all is normal there. The liver biopsy results came back normal. So far so good.
But, I asked at my last Gastro visit if muscle atrophy could cause the liver enzyme numbers to be high, based on some information I found on the internet. So he added a Creatine Kinase test to the orders for the liver function panel, and the CK numbers were elevated. I’m not sure yet what that means, as I’m having a routine colonoscopy this week and won’t see my Gastro again until the followup appointment for that.
I’ve decided that the variation in AST and ALT numbers I keep getting is determined by how much walking I’ve done prior to the test. When I had to walk a long way to the lab the numbers have been higher than when it was close by. I really do think all the abnormal numbers have something to do with whatever is making my walking so labored and oddly gaited.
I have a feeling I won’t get any answers until I see the Neuromuscular Movement Disorder Specialist at UAB in October. But at least we’ve ruled out several things that could have caused this weakness.
I’ve finally reached a point that I’m no longer worried about them finding some horrible something wrong with me, and I’m very thankful for that. I am not as weak as I was back in March when this all started, and I’m VERY thankful for that. I feel good enough to have made a dent in the backlog of work that accumulated when I was so very weak, and that helps my outlook, too.
I’m thankful to God that most of the scariest possibilities have been ruled out, and I’m no longer anxious about the final results of all this testing.
Day by Day with a Movement DisorderPosted on by DB7
My liver enzymes tests came back abnormal again, higher than they have been, so I had a liver biopsy this morning. It will take about a week to get the results.
We had read online about what the procedure would be like, but what they actually did was a good bit different. And I’m still hurting, although not as bad as I was right afterwards. I’m still not able to take a full breath without a sharp pain at the entry point. If feels like I’m getting stabbed every time I inhale with any breath that’s not shallow. Morphine and Lortab barely cut it at the hospital, and they’ve long since worn off. I don’t want to take Tylenol, as I think it would be a waste of time. If I’m still hurting this much tomorrow, I’ll call my Gastro and ask for a prescription.
I’m guessing that my diaphragm is having myoclonic jerks from the irritation to the nerves in the diaphragm. And of course I’m not taking any Myoclonus meds now.
We’re praying that the results of this procedure will give a definitive answer as to whether or not I have any kind of liver damage. Reading all the side effects that the various meds I’ve been on and off for the last six years, it wouldn’t be too surprising if I had Drug Induced Liver Disease. Or it could be Fatty Liver Disease, as I used to weigh 182 pounds. I’m a small boned 5 foot 2 inch lady, so I was way overweight up until about a year ago.
My Neuro is waiting for all these liver tests to be dealt with before he will proceed with referring me back to the Movement Disorder Specialist at UAB. He’s the Head of Neurology there at one of the best diagnostic hospitals in the USA. He’s the one who gave the dx of Essential Myoclonus. But now I’m not jerking and almost too weak to walk.
I also have an Endocrinologist appointment next month. So I’ll see him, if the liver biopsies come back as normal, to check for thyroid problems.
Dr. House, Where ARE you???????
Please keep us and my doctors in your prayers. We need an answer.
Day by Day with a Movement DisorderPosted on by DB4
Well, the blood test came back normal, as did the Jolly test. I’m still having all the same weakness, gait problems, and hoarseness, though. From what I’ve been able to research on Google, neither of these tests is totally reliable, so I’m not ready to breathe a sigh of relief just yet.
I have asked that my Neuro refer me to a particular Endocrinologist, though, so maybe I can get an appointment with him next week. Well, I mean get the authority to make an appointment next week. No telling how long I’ll have to wait to actually SEE him.
Hubby and I are hoping I turn out to be Hypothyroid, as all my symptoms fit that disorder, and our daughter takes medication for it. All my thyroid tests were normal, but that doesn’t mean I don’t have a thyroid disorder. THAT would be easy to fix with medication, so we’re hoping that’s it.
I’ve all but quit jerking, too, even though I cut the Primidone from 3 at a time to 2 at a time, so I lowered it to one tablet morning and night yesterday, and I’m still not jerking. Very weird.
It sure would be nice and neat if medical tests were 100% accurate in every case, but this is real life. There are always exceptions.
Day by Day with a Movement DisorderPosted on by DB
I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.
So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.
I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.
The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)