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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

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

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: CSF

Went to Bed Early – Woke Up Early

Day by Day with a Movement Disorder Posted on August 23, 2006 by DBAugust 23, 2006  

It’s so aggravating when my sleep schedule gets mixed up like this. I made myself stay in bed until 5 by the hardest, but I had the beginnings of a headache by then. I took 2 of the Tylenol arthritis pain meds, so my neck wouldn’t bother me all day and got up. Now I’m on the computer and yawning. Go figure.

Anyway, my legs and back were aching some last night from all the walking yesterday, but other than that, I’m OK. I did have a little trouble after the MRI yesterday. I was very wobbly after the test and had to ask for some steadying help to get back to the dressing room. DH knows me well and had a bag of M&M’s waiting for me, so I finished the Powerade and ate the peanuts and by then I was OK. We stopped and got one of the new Chick Filet’s chocolate shakes on the way home, too. He knows how to pamper me.

I did some research on brain tumors last night. I really haven’t allowed myself to think in that direction up until now, but getting the brain scan kind of pushed my thinking that way. Knowing I’ve been diagnosed with an angioma in the past, plus having the increased cerebral spinal fluid before, makes it much more of a possibility. We won’t know anything until maybe Friday, so I’ll just stay busy today.

Posted in Uncategorized | Tagged brain, CSF, headache, MRI, tests, tumor | Leave a reply

MRI Scheduled!

Day by Day with a Movement Disorder Posted on August 22, 2006 by DBAugust 22, 2006  

April, from Dr. S’s office, called yesterday afternoon, and I’m scheduled for the brain MRI today at 2:30!! I was determined not to spend any time waiting around for HealthSpring to approve the tests, but I sure am glad they did it sooner, rather than later.

I ‘ve had this type of MRI done before. In fact, that’s why he wants this one. When I had it done years ago, it was because I was having severe migraine headaches. I had a terrible headache the day of the test, and it was all I could do to keep from throwing up with all that hammering. At least now, with the Topamax, I don’t go into the test hurting. That previous MRI showed increased cerebral spinal fluid pressure, with a wide white space between the two halves of the brain. It will be interesting to see what this one shows, because the Topamax is the only thing that’s keeping me from having migraines now. I was living off of Goody powders before he put me on those. I’m on the steroids (Entocort) now, too, for the colitis, so that may make a difference, too.

Anyway, this is the MRI where they put your head inside a football helmet thingy, and you have to stay completely still through the whole thing. I don’t know if they will be using dye or not. They did last time. I’ll have to fill up on fluids today, just in case, so the IV will be easier to get, if they need to.

Posted in Uncategorized | Tagged brain, CSF, headache, MRI, steroids, tests, Topomax | Leave a reply

A Personal Journal

Day by Day with a Movement Disorder Posted on August 21, 2006 by DBAugust 21, 2006  

I’ve been waiting for six weeks to see Dr. S to find out what he thinks is wrong with my legs. I tried to remember everything I could that he might possibly need to know about my past history. I still forgot to tell him about the Bolt Factory and the functional dysphonia diagnosis I had before I quit teaching. I also forgot to tell him that I taught Chemistry for a few years, but I really don’t think that has anything to do with it at all. I did give his nurse my notes about that when we took the old back films to them. But I’m still forgetting to tell them about Uncle Bill!!

He did the kinds of hammering around that I expected and said that I definitely had diminished responses in my legs, but the upper body responses seemed normal. He was sorry that the EMG I had already had did not include any tests of the upper body and wants to repeat that test. He watched me walk, asked DH if I were that slow with everything I did, which I’m not. I did tell him I feel the shakes at times with my hands. I definitely have trouble handling pills and money, and my memory is not as good as it used to be, either, but then I’m not as young as I used to be, either.

I told him about the MRI Dr. Stan had done years ago that showed increased CSF pressure and the negative Babinski test, so he wants a repeat of the brain MRI.

He showed us what a Parkinson’s walk typically looks like, and that’s not what I’m doing. I’m not walking like the typical Peripheral Neuropathy either, so that’s the puzzle of it. I told him about my concerns that it might be psychosomatic from worrying about DD so much and being with her through all her PN hospitalizations. He said that would be the diagnosis of last resort, if I understood him correctly.

Anyway, now I’m trying to be patient while HealthSpring takes their beaurocratic time processing the request for a brain MRI and a repeat of the EMG to include the upper body as well. He wants to do a series of blood tests, too, to check for B12 deficiency and toxic metals I’m guessing.

I liked him and I have confidence in him.

Posted in Uncategorized | Tagged appointments, Babinski, CSF, diagnosis, EMG, MRI, Neurologist, peripheral neuropathy, tests | Leave a reply

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