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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: Medicare

Post Physical Therapy

Day by Day with a Movement Disorder Posted on June 27, 2015 by DBMay 10, 2016  

I’ve just graduated from Physical Therapy for my neck. I hadn’t planned on having PT after this particular operation, as my internet research seemed to indicate it was not a normal progression of healing with neck vertebrae fusion. But I had one bundle of muscles at the very base of my skull that just refused to relax. After all, they had been in spasms for years now, and were very happy continuing to cause me pain.

So my surgeon suggested PT. When I started, it was all I could do to get 20 pulls on the weakest yellow Theraband tubing. By the time I graduated this week I could do 40 pulls on the green tubing (red had gotten too easy). Of course I have to rest in between sets of 10 to give my muscles a chance to recover, but I was pleased with the improvement. They spent about 15 minutes of each session doing some rigorous massaging on my neck, trying to release the muscles. I even had one acupuncture session.

The last day’s massage did not hurt as much as the others had, so hopefully that spasm is beginning to release.

I have not been on any muscle relaxers now for about two weeks. I do get pretty uncomfortable in the late afternoon, but the new prescription was giving me problems, so I quit taking it. It’s ironic that Medicare made me stop using Methacarbamol, because “it would make me sleepy and at my age that increased the danger of falling”. HAH! The new one that’s supposed to be safe for me almost makes me Narcoleptic!!! I drop off to sleep out of nowhere when I try to use it. Will certainly be getting that prescription changed when I see my Primary next month.

Pain Level Better

I can’t complain about my pain level, as it’s SO much less than I had dealt with for years. By comparison this is like having a mosquito bite instead of being covered in huge poison ivy blisters!

Now I just have to be disciplined to continue exercising at home. We have plenty of Theraband lengths in all the colors, as well as weights from one pound and up. I had just started using two pound weights for a few PT exercises. I won’t be scared to do stuff now that I have been able to do supervised exercises.

I’m very thankful for my improvement and praise God for my bone and muscle healing.

Posted in MITO | Tagged ACDF, bones, exercise, Medicare, muscle spasms, pain, Physical Therapy, surgery | Leave a reply

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

Re-Testing Peripheral Neuropathy Monday

Day by Day with a Movement Disorder Posted on March 1, 2008 by DBMarch 1, 2008  

I see the MDS specialist the first week of April, so it seemed like a good idea to ask for a Neuropathy test before I see him. When I first saw my Neurologist, it was at the suggestion of my Orthopedist, who had concluded that my super labored walking was not caused by lumbar disk pressure.

He sent me to Lakeshore to have the Nerve Conduction Velocity Test, which uses patches like those they stick on the chest to check for heart problems. They pass an electric current and check to see how long it takes the message to register between the patches. It’s uncomfortable at the time, but not really too bad. The other test is called Electromyography. That’s the one where they poke electrodes the size of needles in your muscles, and it is supposed to show how well the muscles respond when the nerve is stimulated. That test is not at all comfortable. I actually had little pin prick size blood spots all over my legs when that one was over.

Anyway, the results showed definite Axonal Peripheral Neuropathy, mostly in my right leg. Because I was having trouble walking, and the test order came as a result of my Ortho dealing with my back and legs, he did not order the test to be done on my arms as well.

My Neuro was not at all happy that he did not have results for my arms as well as my legs, but he proceeded with the info he had, as my insurance would not likely have paid for a repeat test so soon.

So, I talked to his nurse a couple of days ago, and I’m scheduled to have the complete PN test battery Monday, at my “suggestion” – translate that as strong urging. This test is very uncomfortable, but it seems to me I need to get any tests done now, not wait and “waste” the visit with this very hard to see Head of Neurology at UAB.

I’m still experimenting with any variables I can think of. so, for the last four days I have not used the TAP dental device, which is to control my mild Sleep Apnea. The mouth tics started about the same time I started using the TAP, and I’m trying to be sure that this off and on again mouth twitching I’ve been doing is not being aggravated by the mouthpiece. Surprisingly, I’m still sleeping 7 or 8 hours a night, even without it. I think it did break me of the mouth breathing habit, which may be the cause of the relaxed jaw that was allowing my throat to close up during sleep.

I have noticed a definite correlation between the mouth twitches or tics and how stressed or tired I am. So they get worse as the day goes on. If I stop to think about them, I can stop them momentarily, but it’s as if my mouth is determined to move, no matter what I do, and it soon starts back up again.

I figure I’ll make sure Monday that there aren’t any other tests I should have done, or repeat, before seeing Dr. Watts at UAB. I have to call his office to change my insurance information to show that Medicare is my Primary insurance now, as this is the month I turn 65. So I will talk to his nurse and see if they suggest any other tests. I have learned to be proactive in such situations. It amazes me that doctor’s offices don’t initiate this kind of pre-visit planning, but they don’t.

By way of contrast, when we made an appointment with a financial counselor to help us with investing my inheritance, we received a huge packet of papers to fill out and a long list of documents to bring with us for our first meeting. That’s the way it should be with doctors, in my opinion.

So, I will do what I can to document everything and have everything ready for this crucial visit. I can’t even talk to someone about Long Term Care insurance, or anything insurance related, until I have a diagnosis. No insurance company in their right mind would take me on as a customer right now.

Tax Time is looming, and that’s one thing I am dreading doing, but I can’t put it off much longer. Oh, did you know that people who file an extension will NOT receive this stimulus package $300 thingy they all keep talking about? I have always filed on time, but I know some people habitually delay it, and might need to know that.

I continue to work to get our inventory of plush lovies online, and we have managed to help several families get replacements for lost toys lately, which is extremely satisfying. I’m also helping to beta test a new Mood community on Patients Like Me, and finding the charting of my own moods to be interesting.

I may be twitching, but I am in a good mood today, and that’s a great way to end this post.

Posted in Uncategorized | Tagged dental appliance, Income tax, insomnia, insurance, Medicare, Neurologist, Orthopedist, peripheral neuropathy, Quality of Life, settling an estate, Sleep Apnea, stress, TAP, tests, tics | Leave a reply

Blazing Around the Track!

Day by Day with a Movement Disorder Posted on April 10, 2007 by DBApril 10, 2007 6

We’ve been walking pretty regularly around the park track for several weeks now, with a few days off due to the raw cold, and I’ve seen a good bit of improvement. I started out using the walker, and was really depending on it. We were lucky enough some time ago to find a good buy at an Estate Sale for the kind that has four large wheels and a padded seat. It’s really a Cadillac, as it has all kinds of pockets and sections, plus a large storage bin under the seat. The only drawback is that it takes up a good bit of room in the car, even folded up. But it’s been perfect for the track. I don’t have to worry about getting stranded on the far side, as I can stop and sit any time I need to. Actually, I haven’t sat down yet, but knowing I could makes me push myself further than I would otherwise.

When we started, I was doing good to get around twice, with the walker. Now I’m making two rounds without the walker and two more with it, for a whole mile. Of course, I’m slow, but I definitely see progress! DH is walking with me, and he’s up to 6 laps in the time it takes me to do 4.

I haven’t heard from the Physical Therapy place yet, so I’ll have to call the Orthopedist’s office to get the ball rolling on that.

I spent a very upsetting hour or so trying to talk to Medicare about the charges they denied when Daddy went to the hospital. It’s standard procedure for Medicare to deny any and all claims if the date of service overlaps the date of Hospice service. Each one has to be reapplied for, with a statement of Denial from the Hospice, proving the charge was unrelated to what he was on Hospice for. So the Medicare person was no help at all. I did, however, get somewhere with the Billing Clerk from the Radiologist who didn’t get paid.

Posted in Uncategorized | Tagged exercise, Hospice, Medicare, Orthopedist, Physical Therapy, walker | 6 Replies

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