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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: Physiatrist

It’s Been Awhile

Day by Day with a Movement Disorder Posted on March 26, 2008 by DBMarch 26, 2008 2

Well, the income tax forms appear to be ready, and I have turned over the administration of my TopList to a really great Villager, aka CyberCelt, so those two weighty items aren’t bearing down quite as much these days. We can’t mail the tax forms yet, because now we have to figure out the forms for the Estate. That scares me just thinking about it. As for BLOG VILLAGE, I’m still finding various links and services that need to be moved to CyberCelt. But I don’t mind that, as it is one time thing.

Hubby has recognized that I’ve been more stressed than usual, but he has said several things that make it obvious he doesn’t understand why I’m more stressed than usual. Doing taxes has always been my responsibility, so I feel the pressure more than he does, even though he worked on this year’s with me part of the time. And the appointment with Dr. Watts grows closer, too, which increases my nervousness. I’ve come to terms with the idea that I do not have the disease I thought I did, but the unknown still scares me. It’s not that I think it’s something worse like a brain tumor. I just don’t like the uncertainty. God is trying to teach me to enlarge my Faith Muscle.

I’m not getting any relief from the Lidoderm patches, which is disappointing. But the Physiatrist and I both agreed that he should try the least amount of meds first, because of the April appointment. I am still using them each day, but I can’t tell they are doing any good at all. Of course, if I didn’t have it on, I might be feeling worse than I am.

My foot continues to jerk uncontrollably any time I relax my leg, such as when I put my feet up in the recliner. I still walk with an awkward gait, but I’m doing OK. The mouth tics haven’t been so bad lately, though, which is a blessing. Maybe the Novacaine from the Lidoderm patch is helping my mouth, as I put the patch high on my shoulder as close to the neck on that side as I can get it.

I’m sleeping just fine. Evidently all I really needed was to train myself to not mouth breathe, or it might be that the PD meds were aggravating the apnea. Who knows.

I’m still having trouble setting priorities and finishing tasks. Right now I’m still spending a good bit of time tying up the loose ends of BLOG VILLAGE, plus the Search Service is getting so much traffic that I can’t possibly keep up with it. I need to figure out some way to get a partner on that blog, but I’m not sure how I could do that. Our Plush Toys business is doing quite well, which is very satisfying. It’s fun to help people find toys they have been looking for, and I know I don’t want to stop that. I just need to figure out ways to be more efficient.

I have started a new blog. I know – that sounds crazy, doesn’t it. But I needed to help get the Catalog of our toys online so we could sell them quicker than I can on eBay, and that means increasing the traffic. Blogs are a good way of doing that. And starting a blog is not really that hard. I won’t be making many posts to it, but it will give our Catalog more links in, which Google loves.

I guess that brings things up to date, and now I’ll get off the computer for the night and watch some TV.

Posted in Uncategorized | Tagged Lidoderm patch, pain, Physiatrist, settling an estate, Sleep Apnea | 2 Replies

Been to the Physiatrist and I’m Still Very Busy

Day by Day with a Movement Disorder Posted on March 15, 2008 by DBMarch 15, 2008 9

I saw the Physiatrist yesterday. He’s the doctor who had to review my records before he would agree to even see me. As it turns out, oddly enough, he is the person who did my original EMG and Nerve Velocity Tests.

I was extremely pleased that he did a complete checkup, rather than just asking about my neck. He went through a complete neurological exam, but didn’t venture much as to what he thought was wrong, other than to say Dr. Watts was the one who would be able to say what is going on. He did say he was sure I had some kind of Movement Disorder, but he didn’t think it was Parkinson’s, either.

He went over some options for the neck pain that has persisted since November. We agreed to try the least possible first, particularly since I will see Dr. Watts in less than three weeks. It’s hard to imagine that something I’ve waited so long for is almost here! Anyway, the Physiatrist gave me a prescription for Lidoderm patches that I cut and apply to the trigger points of this pain. They are basically Novacaine that goes through the skin to the muscle. He felt like I would not have any stomach problems by doing it that way.

I put half on the top of my shoulder near the neck and the other half just below the shoulder blade, next to the spine. Those are the spots that really scream if I sit or stand unsupported for very long. Even the time to wash a full sink of dishes or eat a meal at the table is usually enough to set it off, and sitting on the church pews has been very uncomfortable.

I felt a little bit light headed soon after putting the patch on, but that could have been for any number of reasons, as I had not eaten breakfast yet. I am hurting now, but maybe not as bad as usual. Obviously, one day’s use can’t calm down this spasm, so I will just have to see how I do. The prescription is for 3 months worth, and thank goodness I have Medicare and good insurance, as it was listed at over $500!

I’ve been going around in circles lately trying to get a whole lot of things accomplished all at once, and not getting much finished at all. We have started on our taxes, but there are some parts that I must work on before the exact number can go in the form. I’ve been doing them with software for years, but this time my hubby sat down next to me and we went over each part together. That helped me stay calm, plus he needs to know how it’s done.

I’m also trying really hard to get as many of our toys in our online catalog as I possibly can, and I have run into several road blocks I had not anticipated. I had to learn how to use a Shopping Cart program, upload and download files to Google and our ISP to make a searchable data base, and I have been driven half crazy trying to get the catalog to show up properly in Google Base. OK, I know if you are not using the programs yourself that was just a bunch of gobbledygook – but they were very confusing to me, too, and I am definitely not learning new things as quickly as I once did.

I’ve had printer problems and had to buy a new one yesterday, so I couldn’t mail out some orders today, because I hadn’t figured out how to set up the network part of it. That actually worked pretty well, once I did understand the directions, and it even has an answering machine and fax included in it! I feel like I have my own home office now.

Our Search Service is keeping me extremely busy, too, and we have made a few sales from it, as well as helping several very happy parents find the lovie they needed, whether we made the sale or someone else did. I am pretty much caught up with answering the initial request, but I am miserably behind at getting the ones I could not find turned into blog posts.

I feel bad about that, as some of these parents sound so desperate, but hubby is still computer phobic, and that leaves this part of the business entirely up to me. He’s great at scouring the yard sales and thrift stores several times a week when he goes out on his own, and we thoroughly enjoy our Friday Date Day, and he helps a lot with the packing. He takes everything to the Post Office, too, and he has a lot of input about how to do the business side of selling. He just doesn’t want anything to do with the computer part.

Well, enough about all that. It just goes to show that I am staying busy with lots of different parts of my life – and our messy house proves it. Something had to give – so…..

Hopefully it won’t be so long before I post again.

Posted in Uncategorized | Tagged diagnosis, EMG, Income tax, insurance, Lidoderm patch, Medicare, Movement Disorder, muscle spasms, Nerve Conduction Velocity Test, Physiatrist, Search Engines, tics, tremors | 9 Replies

Pinched Nerve in Neck is the Culprit

Day by Day with a Movement Disorder Posted on January 23, 2008 by DBJanuary 23, 2008 4

I went back to the Orthopedist yesterday for the follow up on the Physical Therapy I’ve been getting. He says I have a pinched nerved on the left side from a bulging disk. It’s all part of the Degenerative Disk Disease problem I have with several different cervical and lumbar vertebrae. Anyway, since I cannot have epidurals, he is making arrangements for me to see a Physiatrist at the Lakeshore Rehab Facility. This place is a Paralympics training facility and very highly thought of. It will take several weeks before I even get the appointment, as the doctor evaluates all the info my Ortho sends him, before he decides IF he will see me or not! Talk about a busy doctor!!! So, it’s hard to say who I will see first, the Physiatrist, or the MDS at UAB. Either way, I’ll be getting help from some extremely well thought of doctors, and for that I am very grateful.

In the meantime, he gave me a prescription for the Home TEN’s, which my PT facility can fill tomorrow. And he also sent me home with an inflatable cervical collar that provides traction. It’s not at all comfortable, as I have a very short neck. Even the small size seems too big to me. I’m to take it to PT tomorrow, so they can help me learn how to use it correctly. Then maybe it won’t be so uncomfortable. The directions say to inflate it for 10 or 15 seconds, deflate, then inflate again, for the first week, leaving it on for no more than about 15 minutes. Then I gradually work up to a steady 15 minute session with it.

The PT also told me the other day to make the neck exercises a consistent part of my daily routine, whether they seemed to be helping or not. He said it could be months before I really saw improvement, but to continue indefinitely with the routine they gave me. They’re easy enough to do, so it’s just getting it to be part of my day’s routine that remains to be accomplished.

So, another piece of the puzzle has been explained, and now I wait to see the Physiatrist for an evaluation, as well as the MDS at UAB. Looks like this is going to be an interesting year, and I choose to believe it will be a year where I get help with my pain, stiffness, and walking problems. Who knows, maybe I’ll even stop shaking!

Posted in Uncategorized | Tagged cervical collar, Degenerative Disk Disease, herniated disk, Lakeshore Rehab Facility, muscle spasms, Orthopedist, pain, Physiatrist, Physical Therapy, Quality of Life, TENS, traction | 4 Replies

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