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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: herniated disk

Disk & Muscle Spasms Rear Their Ugly Head

Day by Day with a Movement Disorder Posted on March 26, 2011 by DBMay 17, 2016 2

For the first time in quite a few years, I’ve been having real problems with my neck and back for the last couple of weeks. It seems to get worse as the day progresses, so by the afternoon and particularly at night I’m really not comfortable at all.

I’ve tried Tylenol and Aleve, but I can’t even tell I’m taking them. I’ve also been having constipation problems again, so I’ve been reluctant to ask one of my doctors for a powerful pain med, knowing strong pain meds would just make the constipation worse.

I’ve been thinking the pain spasms would clear up on their own if I gave it some time. I’ve tried to keep moving my neck and shoulders as much as I can, used the hot pad, and have been using the inflatable neck brace for a short time each morning. It’s way too uncomfortable to use it for very long, but it’s extremely adjustable, and I have all the Velcro sections pretty well suited to my short neck. After I put it on I pump up the bladder in it and it gives a little traction. That helps for awhile, but it’s way too painful to use it after the spasms take over later on in the day.

The human adult head weighs about 10 pounds, and the neck and shoulder muscles have to be strong enough to carry that weight around in all kinds of positions all day long. Just imagine how long your arm would last without fatigue and pain if you were to lift a 10 pound bag of potatoes for 12 straight hours! Normally, our bodies are so wonderfully made that we don’t give it a second thought.

But I have Degenerative Disk Disease and Osteopenia, which means my disks and bones are not as healthy as they should be. I’ve had bulging disks in my neck and lower back for many, many years. So I guess I was overdue for a round of pain with one or the other. This time it’s the Cervical disk that seems to be the focus.

I’m not sure, but the Myoclonus may be making the spasms worse. I was in quite a quandary as to which doctor I should go see, my Neurologist or my Orthopedist. The trigger points seem to be on the right side, not near my left shoulder that does all the jerking, so I’ve decided the Orthopedist makes more sense.

So, it looks like I will be making an appointment with my Orthopedist next week.

Posted in Symptoms | Tagged constipation, Degenerative Disk Disease, Essential Myoclonus, herniated disk, Movement Disorder, muscle spasms, Neurologist, Orthopedist, Osteopenia, pain, Quality of Life, side effects | 2 Replies

Unexpected Aftermath of EEG Test – Still on Clonazapam

Day by Day with a Movement Disorder Posted on April 21, 2008 by DBApril 21, 2008 4

I had an EEG back when my own Neuro was trying to decide what was wrong with me, so I knew what to expect. Well, I thought I knew what to expect. My “good” left foot has been extremely painful and difficult to walk on for the last few days. At first I blamed it on all the walking we did at the cemetery in my Sketchers, which I now use as Sunday shoes. But I don’t think that was the culprit.

I was on the exam table for about 45 minutes, jerking and shaking the whole time. I can’t lay down flat like that without setting off back spasms, so I put my good knee up and had my bare foot pressed against the thin pad of the exam table. I must have been pushing down on my foot a lot harder than I realized, in an effort to bear the discomfort of all the jerking. It is gradually improving, but I noticed yesterday that my thigh is also aching. My foot was hurting so badly that I had not even noticed the leg. So, I’ve decided that’s what is wrong with my foot, rather than my shoes. Those are the only unclunky looking shoes I have been able to wear, so I am glad that they probably did not cause my good leg to give me so much trouble.

You are supposed to go up with the good and down with the bad leg, so it was comical yesterday at church trying to figure out which foot to lead with. One hurt, and the other shook! LOL I decided it was safer to lead with the painful one, rather than the jerky one. At least I was less likely to fall.

Speaking of shaking, the Clonazapam may be helping some, particularly with my mouth, but I am staying in a stupor, sleeping through my morning pill alarm, and just generally fuzzed out. He says it will go away — I sure hope so. Otherwise, I won’t be able to take this med.

I can’t see any improvement in my foot or my shoulder jerks, though. I’m waiting now to hear about my MRI appointment. I am going to call them today, since we still have not heard from them.

Patience … still haven’t learned it.

Posted in Uncategorized | Tagged appointments, brain fog, Degenerative Disk Disease, diagnosis, difficulty walking, EEG, herniated disk, MRI, muscle spasms, pain, tremors | 4 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

Two Ruptured Cervical Disks – No Wonder I’m Hurting!

Day by Day with a Movement Disorder Posted on December 16, 2007 by DBDecember 16, 2007  

I talked with my Orthopedist’s PA the other day, and she confirmed what I already knew. The disks are bulging on the two cervical vertebrae that are degenerating, and that’s what is causing the pain and stiffness. She doesn’t want to make an anesthesiologist appointment to get an epidural there until I have a chance to talk to my Neurologist. I see him Wednesday. I did ask that she talk to my Neuro’s nurse, rather than expect me to relay messages. It seems that the ER did not send any information to him about my time in the ER in September, when I had the horrible drug interaction with a steroid shot. So his nurse was completely surprised to hear I had a bad reaction.

So, we’ll be going to the hospital to sign the release form to get the records to take to my Neuro.

I continue to be concerned and in prayer for several Parkie buddies on the PatientsLikeMe site, who have been diagnosed with skin cancers. One has Melanoma, and the other has Squamous Cell Cancer. Both were caught early, with every reason to believe they will be just fine. We are all praying for their recovery.

There is another woman on there who’s brother also has PD, who had unrelated surgery, and to quote her – “his brain is mush.” She said he has already tried to leave the hospital. When I thought I was going to have to have surgery back a few months ago, I learned all kinds of scary things about how difficult it is for PWP to have any kind of anesthesia without serious side effects. Also, it is very difficult to get hospitals to keep the PD meds coming on time. And that can mean the difference between being mobile and thinking normally, and not.

I wore my new “Sunday” shoes today, and I really like them. They help with my balance, they feel good on, and they are unobtrusive. I doubt if anyone has even noticed that I’m not wearing dress shoes. I don’t feel the least bit self conscious in them, so if someone has noticed them – I don’t care.

I am having one problem, though, that came unexpectedly. Last night I noticed a red itchy place on my wrist where the back of the Timex watch is against my skin. I had noticed that the skin was getting slick and shiny there a couple of weeks ago, so I started taking it off at night to go to sleep. Evidently I didn’t heed the warning in time, as I now have a nice round ringworm there. It’s been holding too much moisture against my skin, as it is fairly tight. It’s a big man size watch, and not particularly comfortable, but I was willing to tolerate it, because it is so helpful. I may end up taking the band off, and just keeping it in my pocket.

I have not been able to do much exercising for the last month, partly because of my neck, but mostly because my DH over did it and his Sciatica is acting up again. I’ve been so busy working on the requests on our Plush Memories blog that I have been sitting still more than I probably should be. I’ve not been doing the Tai Chi, either. I know I really need to get back with a scheduled exercise program, the way I was before.

So, some things improve, while other new aggravations begin. Not so different than what happens to everyone, right?

Posted in Uncategorized | Tagged balance, brain fog, cancer, drug interaction, epidurals, exercise, freezing, herniated disk, melanoma, muscle spasms, Neurologist, pain, PatientsLikeMe, prayer, Quality of Life, skin cancer, Tai Chi | Leave a reply

Is My Mind Playing Tricks on Me??

Day by Day with a Movement Disorder Posted on August 26, 2006 by DBAugust 26, 2006 2

Another reason I’m afraid of using a walker in public is that I’ll be setting myself up for future embarrassment. I’ll have to explain that one.

My original back flare up, that precipitated this difficulty walking, was caused by spending the better part of this last year taking care of our older daughter, as she was in and out of the hospital something like ten times for about 60 days total. I stayed with her constantly with each hospital trip, “sleeping” in a recliner, and my back paid for it.

I took care of her at home in between hospital visits, too, often getting up in the middle of the night for hours dealing with her needs. I all but single handedly packed and unpacked their things, as the apartment our SIL and she were in was not handicap accessible. The apartment people moved them from one apartment to a better one that she could get in and out of easily, and it had an extra bathroom, too, which was a big help. All that packing and unpacking took its toll on my back, too.

I survived by just about living off of Goody powders that whole year, as I kept a backache and a headache almost constantly. So why am I worried about being embarrassed??

Our daughter developed Peripheral Neuropathy as a result of nutritional deficiencies from Gastric Bypass surgery that she had had almost a year and a half before. In a matter of a couple of weeks, she went from noticing being a little clumsy to not being able to hardly stand at all!! It took them quite a while, with lots of second opinions and tons of tests to decide on a diagnosis and course of treatment, but she’s doing fine now.

What worries me is that the stress of all this may have caused me to develop a psychosomatic illness, triggered by the very real pain I was experiencing from my herniated disk. When the epidurals took care of the pain, the walking did not improve. Here I am, with Peripheral Neuropathy, after helping our DD, who has Peripheral Neuropathy?? Sounds a little fishy to me, don’t you think?? Oh, and before you jump to a wrong conclusion, dear reader, she’s adopted, so that rules out a genetic link.

Our family knows just how much stress I have been under for some time, as I have been the care giver for my mother and FIL with Alzheimer’s, my DH with cancer, and have had surgery myself, besides taking care of our DD. I’ve also been the main care giver for my Daddy, who is now 101, lives by himself, and is legally blind. Yes, he’s amazing!

My family will understand if I am suddenly “cured”, because it turned out to be all in my mind, and not a physical problem. I’m not so sure others will be so forgiving, but will think I was trying to get sympathy or something, using the walker when I didn’t “need” it.

Posted in Uncategorized | Tagged difficulty walking, headache, herniated disk, peripheral neuropathy, psychosomatic | 2 Replies

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