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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!

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C7 Cervical Vertebra Pain

Day by Day with a Movement Disorder Posted on May 16, 2017 by DBMay 16, 2017  

C7 Cervical Vertebra Pain

I’ve been dealing with terrible neck and upper back pain ever since having the allergy test about five weeks ago. I had to remain still on my stomach for 20 minutes on a very narrow treatment table of some kind. I had no comfortable way to place my head and arms. It was excruciating!

I’ve been trying to calm down my jangled nerves and strained muscles by using muscle relaxers. On days when the pain was particularly overwhelming I’ve taken a Lortab – but never more than once a day. I’ve been sleeping on a hot pad and using it behind my upper back while seated all day long. I use an ergonomically designed back support and neck cushion, and they help a lot when I’m sitting.

X-rays

My pain level has decreased very little in all this time, so I went to see my Orthopedist yesterday. The X-rays show that all the hardware and area around it from my cervical fusion surgery looks good and stable. That was a HUGE relief! But it does show more deterioration in the vertebrae lower in my neck and in my upper back. That’s my Osteopenia doing it’s thing. No telling what that would look like if I had not taken Forteo for two years. I’m on Prolia now, plus I’ve taken calcium supplements for years.

Also, the spurs on my thoracic vertebrae are more prominent. That’s old age arthritis doing it’s dirty work and certainly explains some of the pain.

When I saw the x-rays I assumed he would say that my pain is coming from across my shoulder blades and the neck pain was referred pain. Quite the contrary, he said it was typical C7 cervical vertebra pain being referred to right below the shoulder blades.

Now What?

He suggested physical therapy – I said I didn’t need to go as I knew all the exercises – Now that I know the hardware and neck bones around it are OK – I’ll exercise at home.

He suggested an epidural – but I want to try exercise first. And I’m still planning to have sinus surgery in a few weeks. He agreed it would be best to have that taken care of before scheduling an epidural.

I asked for something between aspirin and Lortab for the pain. He suggested several meds that I can’t take – mostly because of gastric issues and one that I’ve had a severe reaction to. So then he suggested Gabapentin. THAT I CAN TAKE, so I have that prescription now.

And he said it was OK to take the Lortab if I had to. But I still don’t want to use it if I can possibly avoid it.

I have a long relationship with this Orthopedist, and he’s leaving it up to me when to come back for another appointment. I appreciate doctors who listen to their patients and treat them like human beings.

Posted in Symptoms | Tagged bone loss, c7, cervical vertebra, Osteopenia, pain | Leave a reply

Tear Duct Saga

Day by Day with a Movement Disorder Posted on February 24, 2017 by DBFebruary 24, 2017  

Tear Duct Problem Continues

I saw my eye doctor yesterday. He is pleased with how much the tear duct knot between my eye and nose has come down. I did have to call the eye doctor for a new Doxycycline prescription last Monday. As soon as I went off the antibiotic my eye became painful again, as the knot went back to feeling like a marble under the skin.

He did not probe the tear duct as he has planned, since it does seem to be getting better. He’s refilled the oral antibiotic, nausea med, and antibiotic eye drops. I will see him again in two weeks.

I talked to him about my fears that the long standing nature of this blockage means the tiny tear duct tube has grown shut. He assured me that even if that is the case, being patient and giving the area a chance to completely heal will not make opening up a fused tube any harder than it would be now.

I’m encouraged that he agreed to keep refilling the antibiotics. It has been my experience that my doctors are too quick to take me off them. They want to treat me like I was “normal”, and I’m sure NOT. For over a year, different docs kept taking me off the antibiotics too soon. And each time the infection came back with a vengeance. Whatever is going on in that duct – it’s definitely drug resistant!

Our routine is full of dealing with this tear duct – drops four times a day, oral antibiotic and nausea med twice a day, nasal wash, and hot compresses several times a day. I’ll keep doing my part, and God will do the healing in his own good time.

Praying for complete healing!

Posted in Symptoms | Leave a reply

Blocked Tear Duct

Day by Day with a Movement Disorder Posted on February 17, 2017 by DBFebruary 24, 2017  

Blocked Tear Duct HURTS

I now know that the painful swollen area in the corner of my right eye is a blocked tear duct.

It was so terribly painful 10 days ago that I went to my GP doctor. He thought it might be cellulitis. So he put me on a strong antibiotic and an anti-nausea med so I can tolerate the antibiotic. And he told me to go to my eye doctor if it didn’t clear up in a couple of days.

I also already had a scheduled appointment with my new ENT last week. And he, too, said it appeared to be a blocked tear duct and wanted me to see my eye doc.

Eye Doctor

So my eye doctor used a tiny tool to probe the tear duct and then a larger tool to try to widen the tube. He numbed me first, of course. After using three different size probes, he used a syringe without a needle on it to inject fluorescent dye fluid in the bottom tear duct opening. It should have come out my nose, but it came out of the top tear duct under my eyelid instead. So it’s blocked big time!

He added double ophthalmic antibiotic eye drops to my medicines four times a day. I saw him again yesterday, and it’s still blocked, but not as inflamed. He told me to continue with the nasal wash and hot compresses I had already been doing several times a day. He did not refill the Doxycycline antibiotic, but wants me to rest my digestive system for a week. I see him again next Thursday.

So the saga of my sinus/eye problems continue. Thank Goodness I’m not in such pain anymore, but I look forward to the day I don’t have the nasal discharge, and I don’t feel and sound like I’m stopped up with a cold.

 

 

Posted in Symptoms | Tagged pain, Quality of Life, sinuses, symptoms, tear duct | Leave a reply

Visible vs Invisible Disabilities

Day by Day with a Movement Disorder Posted on December 6, 2011 by DBMay 18, 2016 2

It’s absolutely amazing how wonderfully helpful and concerned total strangers have been since I started wearing the neck brace out in public! Not only are they helpful, but they also strike up a conversation with me, usually asking if I was in an automobile accident. We ate lunch out yesterday, and a waiter who wasn’t even taking care of us stopped by to ask what was wrong with my neck! I can’t imagine that people would be so interested if I had an arm in a sling. So I think at least part of their questioning is that people “enjoy” hearing stories about wrecks! LOL!

But I digress. This sudden “visibility” (that I have avoided for so long out of self consciousness) affirms that most people have a kind heart toward those with disabilities, but they are usually too preoccupied with themselves to notice those who are struggling with everyday activities. I must work at being more conscious of others when I am in public.

I think of all the people dealing with the various Movement Disorders who don’t use a cane or walker, but who find even walking around to be difficult. I’m sure most don’t want to be seen as disabled, but I’m sure they would all appreciate the little kindnesses, like holding a door open for them. But without that “hit them over the head with it” obvious indication of limited abilities – people just don’t notice they could use a little extra TLC.

I know that has been true for me for a long time. I’ve been uncomfortable with the idea of being seen as handicapped, although I’ve been grateful to have and use a Handicap Sticker for the car. But I’ve also been saddened that friends didn’t notice that I’m struggling. Then I start fussing at myself that I’m having a pity party and to get over it. I can’t have it both ways, I tell myself. I don’t want to be one of these people who is constantly listing all their current ailments, aches, and pains, so it’s my lack of voicing how I’m doing that prevents people from realizing I’m having troubles.

The neck brace has very quickly changed all that. It’s a shame it took using it to cause people to notice the problems I have had for a long time with simple activities like walking.

Posted in Symptoms | Tagged difficulty walking, disability, disabled, handicapped, hidden disability, Movement Disorder, neck brace, Quality of Life | 2 Replies

More Tests – Still Waiting

Day by Day with a Movement Disorder Posted on June 18, 2011 by DBMay 17, 2016 4

I went back to my Neurologist this week, since I’m still having lots of weakness, odd gait, balance issues, and other symptoms, such as my voice getting very hoarse the more I talk and the later in the day it gets. He had a Jolly’s Test done, which measures how much the muscles in one hand fatigue as they are repeatedly stimulated with an electrical shock.

This was not a fun test at all, but I got through it. Trying to joke a bit, I said something to the technician about this must be what a Taser feels like – and she said the test shock was stronger than a Taser! No wonder it hurt so badly! But, the good news is, my Neuro said he would call that day if the test came back abnormal…and he did not call!

I did have more blood tests done, however, and the results won’t be back until next week. I’m to call and see how those turned out, and then I guess I see him again, probably for more tests. I’m SO ready to feel better!!

In the meantime, since I am not jerking the way I was for the last year or so, he’s cut back my Primidone dose, and I’ve stopped my Triavil, Simvastatin, and Magnesium supplements. I don’t like stopping more than one medicine at a time, because you can’t tell which one was the culprit, but I’m getting desperate now. So I’m not doing this the proper way. I stopped them all at once. So far no additional jerks on the lower Primidone dose, but it’s only been two days. I can’t tell any difference yet, but I can hope that cutting down on my meds will do the trick.

We covet your prayers that God will guide my Neurologist in the right direction.

Posted in Symptoms, Tests | Tagged balance, difficulty walking, God, hoarseness, Jolly's Test, Magnesium, Neurologist, prayer, Primidone, Simvastatin, Triavil, weakness | 4 Replies

Steroids – I Hate Them!!!

Day by Day with a Movement Disorder Posted on April 12, 2011 by DBMay 17, 2016 6

I had tried so hard NOT to have to get a cortisone shot in my neck, because I had trouble the last time I had steroids. But when I had an allergic reaction to the Voltaren Gel, I really didn’t have a choice but to allow the ER doc to give me a steroid shot and put me on a Medrol Pak.

Normally, steroids make me very shaky, hungry, and I can’t sleep. This time I was on Benadryl and Flexeril, too. I don’t know if that made the difference, but I had a completely different reaction this time. I’ve gotten so weak even my voice sounds weak. I’ve not been hungry at all, and I’m not having any trouble sleeping.

I called my doctor yesterday, because of all the weakness. His nurse said to keep an eye on my blood glucose levels and my blood pressure, as steroids can elevate both. So, I checked my blood several times yesterday – and it was lower than usual!

I have one more day of steroids to take, but I quit the Benadryl and Flexeril yesterday, as I am no longer swollen and my neck is gradually improving. The nurse said I may continue to feel weak for up to 4 days after I stop the steroids tomorrow. Oh, goody!

Hopefully the next post will be more upbeat than the last few have been.

Posted in Medicines and Supplements, Symptoms | Tagged allergic reaction, Angioedema, blood glucose, blood pressure, side effects, steroids, weakness | 6 Replies

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

So How Common Are Myoclonus and Dystonia?

Day by Day with a Movement Disorder Posted on February 13, 2011 by DBMay 17, 2016 12

I had an interesting conversation today after church with the lady who happened to be sitting behind me. She asked me if I was sick, but I knew what she was referring to, so I told her about having uncontrollable jerks and apologized for disturbing her worship. She, of course, said not to worry, but asked what I had. When I told her I had a form of Myoclonus, she told me she had Dystonia! What are the odds of two people sitting that close to each other in a little country church, both with relatively rare Neurological Disorders!!

I tried to do some research to find out just how common these two Neurological Disorders are in the USA, but only found one site that gave a number I actually could understand. Most sites were comparing percentages in different populations all over the world. The WrongDiagnosis.com site listed both Myoclonus and Dystonia as being classified in the USA as Rare Diseases according to the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH), which means no more than 200,000 people have been diagnosed with each of these Movement Disorders in the whole US. There are only about 2,000 people in our town!

I don’t know if she grew up in this town or not, but we’ve only lived here as adults. I do have very serious Neurological diseases in my family history, and I would be very interested in finding out if she does, as well. My interest in where she grew up stems from the fact that our town had at one time the worst EPA rated toxic site in the state!!!

Even though we don’t have the same Disorder (I choose NOT to think of it as a disease!), having someone else I actually know who battles some of the same demons I do was quite a surprise. I look forward to more conversations with her in the future.

So, exactly what is Dystonia, and how is it different from Myoclonus?

The best place on the internet to learn about Neurological Disorders is We Move. They have a forum with sections for each disorder, and I have found the encouragement of other people who comment there who battle Myoclonus to be very helpful and comforting.

This is the overview on We Move of Dystonia:

“Dystonia is a neurologic movement disorder characterized by sustained muscle contractions, usually producing twisting and repetitive movements or abnormal postures or positions. Almost all dystonic movements share a directional quality that is typically sustained, sometimes for an instant, as well as a consistency and predictability Dystonia movements are directional, forcing the involved body part or region into an abnormal position, which is consistently present.”

Put in simple terms, various muscle groups contort in some way and tend to stay that way.

If you saw the TV show “The Doctors” here in the US this week you saw a young woman who had a severe case of Dystonia who was helped tremendously by DBS (Deep Brain Stimulation) brain surgery.

Myoclonus is defined this way:

“The term myoclonus comes from the Greek words for muscle (myo) and tumult (clonus) and refers to sudden, brief, shock-like movements. These movements may be “positive” or “negative.” Positive myoclonus results in contraction of a muscle or multiple muscles. In asterixis, or negative myoclonus, there is a brief loss of muscle tone and then the tightening (contraction) of other muscles; this results in a flapping-type motion. These movements, which cannot by stopped at will (nonsuppressible), often have a characteristic saw-tooth pattern, and they usually disappear during sleep.”

So Myoclonus involves various types of jerking or flapping motions.

Posted in Symptoms | Tagged contracting, Dystonia, Essential Myoclonus, God, jerks, Movement Disorder, myoclonus, Neurological Disease, prevalence, We Move | 12 Replies

Jerking Has Been Much Worse

Day by Day with a Movement Disorder Posted on November 16, 2010 by DBMay 17, 2016  

I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.

So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.

I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.

The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)

Posted in Symptoms | Tagged blood tests, brain fog, Essential Myoclonus, Gabapentin, jerks, memory, MRI, Neurontin, Primidone, Quality of Life, thyroid, tics, twitches | Leave a reply

So THAT’s Why I Wasn’t Getting Better

Day by Day with a Movement Disorder Posted on December 17, 2009 by DBMay 19, 2016  

Well, I had an endoscopy Monday morning, and the pathology report came back yesterday. I have an infection of the stomach lining – Gastritis. So now I’m on antibiotics again, and still taking the Carafate. I decided on my own to drop all the supplements for now, and just take my prescription meds – which is a lot!

I felt lousy yesterday, but I’ve waked up this morning feeling better. I’ll know when I eat breakfast in a bit if the medicine has had a chance to calm down the stomach lining any. They gave me a photo of it when I had the endoscopy, and it looks raw alright, so I can’t expect it to clear up overnight. I sure hope I feel better by Christmas, at least.

I’ve been swamped with requests for help finding lovies in time for Christmas, and I’m sure that has put some stress on me. But it feels so good to help someone find what they could not find on their own that I can’t stop. My inbox was not as full this morning, and it should start slacking off until after Christmas now, as there’s hardly enough time to get anything in time for Santa to deliver it.

I’ve been so busy on the computer, plus really not feeling up to doing any cleaning, that I haven’t put up any Christmas decorations, yet. Hopefully, I can get that done today. All the big presents for our grandchildren have been bought since Thanksgiving (online, of course), so now I need to wrap them. We still need to put some more things in everyone’s stockings, too. That takes the most time of all. All these Christmas doings that still need to be done puts stress on me, too. So I am trying my best to just go with the flow and get done what I can. There have been some years when I was wrapping on Christmas Eve, so I have time yet! LOL

We did go to my Sunday School class’s Christmas party and to the Open House at our preacher’s house for the Deacons and their family, so I’ve had a chance to party a little. I took a sugar free dessert to the party, so I could have something sweet without upsetting my glucose readings. I didn’t feel like eating much, but I enjoyed going.

So, I continue to hope that I will feel better by Christmas, and still trying to get as much done as I feel like doing for now.

Posted in Symptoms, Tests | Tagged Christmas, Gastritis, nausea, stomach | Leave a reply

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