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
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.
I guess I’d better explain the Bolt Factory significance, in case I decide to share this blog. We live within a quarter of a mile of an EPA designated toxic site that has been cleaned up. Trouble is, we lived here all the years it was contaminating the area with heavy metals. Now I’m having neurological problems. In our little neighborhood there has been a high incidence of Alzheimer’s, Parkinson’s Disease, and all kinds of cancers. My own mother died of Alzheimer’s Disease. On the other hand, my Daddy is 101, and the lady across the street just passed away at 100.
So, for what it’s worth, I really do need to remember to tell Dr. S about where we live. All the information about the heavy metals that were found here are on the Internet, with the kinds of problems they can cause.
There’s something about Sunday that just exhausts me. It starts with the special Sunday breakfast with Daddy. That takes more standing on my feet than the normal one does, but it’s part of his routine, and I don’t want to change that. Another thing that contributes to my problems on Sunday is the shoes. They don’t give me any support. By the time I’ve walked from the car to the SS room, I’m completely exhausted. I do get awfully nervous teaching, although it was better yesterday. D will be teaching full time, starting Sept. 1, so I won’t have that to stress me out any more, except for substituting when she’s sick. That’s for the best, I’m sure.
I sit at home all day long, so I don’t know why sitting in church should tire me out, but it seems to. The pews just aren’t as comfortable, I guess. Anyway, I end up taking a nap every Sunday afternoon, just worn out. I didn’t even feel like driving DH to Deacon’s Meeting yesterday, so he took me to Daddy’s and then came to get me and took me home before he went back for church last night.
My legs, shoulders, and neck were hurting by nine o’clock last night and I had the beginnings of a headache, so DH set up the vibrating pillow and I took 2 of his Tylenol arthritis pills and went to sleep for the night. I feel better this morning.
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 thought I’d give the new Beta Blogger a try with a new blog about my problems using my legs. You’ll see me trying different templates and doodads as I fiddle with this new system. From time to time I may do a post about what I’m trying out with the beta.
But mainly, I wanted a place to talk about the strange goings on with my walking. Just a little background material. I do have an old herniated lumbar disk that flares up and causes trouble from time to time, and I have spurs on some cervical vertebrae that also give me fits at times. I’ve had numerous epidurals over the years for both. There have been several episodes when my back was hurting, as it was this last year, when the sciatic nerve was involved, where I had trouble walking. Every other time, the walking improved and went back to normal with time when the back healed. It didn’t happen that way this time.
After the series of epidurals took care of the back pain in April, I still have not been able to take a normal step. Every step is like picking up lead weights, and it’s all I can do to move my feet. There’s no pain, but it doesn’t take much walking to exhaust me completely. So, mostly I’ve been sitting and working on the computer for the last few months, waiting for doctor’s appointments, first with the orthopedist, then with the EMG tech, and now with the best Neurologist we could find.