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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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Exercise Intolerance

Day by Day with a Movement Disorder Posted on December 2, 2017 by DBJune 6, 2021  

MITO and Exercise Intolerance

Because of my Mitochondrial Myopathy, my muscles have always fatigued very quickly. It’s called exercise intolerance, as my muscle cells produce the ATP energy packets in an inefficient way. When I was teaching, I was walking around the classroom most of the day. But since retiring, and after our caregiver season passed, I mostly sat at the computer. My muscles are weaker than they should be, because of my poor choices. At the time I felt so bad I didn’t imagine that I could exercise.

I had major skull base surgery in July, and afterwards I was in a very weakened condition. Increasing activity level is an important strategy in The Energy Blueprint* program I’m trying to follow. I knew I’d have to make the suggested changes slowly.  But the other strategies I’ve incorporated from the Energy Blueprint have raised my energy level a good bit. So I felt safe in trying to start exercising a little.

Starting Slowly

I started by walking to the mailbox and back, which is maybe 50 feet or so. Very gradually I increased the length of my morning walk until I was walking a circuit around our house on the driveway, sidewalk, and patio. I got up to about a quarter mile and was walking at a fairly quick pace. I looked forward to getting out in the morning sun and exercising.

But, I overdid something and my left foot became extremely painful in the arch. The pain was at its worst first thing in the morning when I put weight on it. Based on my internet searching, I think I developed Plantar Faciitis. I slept in my shoes for about a week to help stretch the arch. And I started putting my shoes on first thing in the morning.

I also quit walking or standing any more than necessary in the house, because of the pain. And you know what THAT did to my painstakingly developed exercise routine. So I temporarily moved backwards in my efforts to overcome the MITO induced exercise intolerance.

SilverSneakers

Now the foot is much better, but still a little tender. I’ve increased the amount of indoor standing and walking activity, AND I’ve joined a gym. My health insurance provides free gym membership through the SilverSneakers program. And I decided to take advantage of it.

They have machinery that raises my heart rate and exercises my legs without standing or walking on the sore foot. I’m alternating using the recumbent bike and the arm equipment, so my muscle groups have time to recover. It will be a while before I’m strong enough to use most of their machines, but it’s great that I can be active again!

Working on it

I can definitely tell that my exercise tolerance level has moved up a notch or two – that I can do more before I feel the muscle cramps, muscle fatigue, and jerking. I still have to be very careful not to over-do. And sometimes I misjudge my tolerance level and pay the price for it, like my foot pain. But the prize of being more active is worth the time spent to overcome my exercise intolerance.

Posted in Exercise | Tagged exercise, exercise intolerance, fatigue, pain, SilverSneakers, The Energy Blueprint | Leave a reply

Surgeries Are All Planned Now

Day by Day with a Movement Disorder Posted on June 9, 2017 by DBJune 9, 2017  

My Summer of Surgeries

I have all my surgeries planned now. It’s taken months of going to this doctor and that one to get everything lined up. But it looks like I will finally get the front side and the back side of my head feeling good at the same time! Yeah, yeah, I know – there’s nothing in between. HaHa!

ENT Surgery

I get the Balloon Sinuplasty done on the sinuses above my eyes next week, that’s in mid June. He’s not sure whether the complete blockage there is trapped fluid or nasal polyps. But he expects to be able to clear that area out.

He’s also going to clean out some polyps in the sinus cavities below my eyes (where I had surgery last year).

AND the biggie – he’s going to remove a very large bone spur on my septum and probably put a temporary splint on either side of the septum to help it heal straight. He may also have to actually straighten the septum. I’m not 100% clear on whether the septum is deviated or not. Maybe it just looks that way to me on the CAT scan, because of the big lump of bone growing where it shouldn’t be.

Oculoplastic Surgery

That gives me two months to recuperate before I have the dacryocystorhinostomy (DCR) surgery done on my blocked tear duct in mid August.

C7 Cervical Vertebra Pain

Hopefully by the time I heal from the DCR surgery, my neck pain that’s been radiating down to my shoulder blades will have finally calmed all the way down. If not, I will make an appointment with my Orthopedist for an epidural.

Well, that’s my plan for all the surgeries, anyway. God may have other plans for me, but I can trust Him to work out for good whatever comes.

 

Posted in Surgery | Tagged deviated septum, nasal polyps, pain, sinuses, surgery | Leave a reply

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

Pain after Allergy Testing

Day by Day with a Movement Disorder Posted on April 19, 2017 by DBApril 19, 2017  

Pain after Allergy Testing

You wouldn’t expect to be in pain after having allergy testing, but this last week has been terrible for me. I didn’t have one bit of trouble with my skin from the testing. I didn’t even itch afterwards.

The pain is coming from my neck. It’s as bad as it was before I had the cervical fusion surgery. My muscles are all jangled and spasming all the way down to my waist. Anything that requires lifting my head above eye level even the slightest is extremely painful. And I have a constant burning and throbbing at the back of my head. Turning left or right is not fun, either.

So how did this happen from allergy testing? I had to lie very still on my stomach on a hard and narrow procedure table with no good way to get my head comfortable. She lowered the head section as much as she could, and I had my forehead on it. There was no place for me to rest my arms, so I kind of held onto the sides of the table. By the time the testing was over after maybe 20 minutes like that my neck and shoulders were terribly fatigued and painful.

Pain Meds

I’m off Goody Powders or even plain aspirin in preparation for having more sinus and septum surgery, so I’ve had to use my Methacarbamol to try to relax my muscles. I was in so much pain Sunday after sitting in the pew Sunday morning that I took a Lortab I had left over from my last surgery. Obviously I can’t do that on a regular basis. So I’ve been supporting my neck with the gel U shaped pillow I use in the car and also sleeping on a hot pad.

Yucky

I’ve not been very clear thinking at all thanks to my pain level. And the yucky sinus discharge and blocked tear duct aren’t making me feel any better, either. It seems like everything my body needs to do ends up being harder than it should be. I blame it on my age and the MITO that makes my cells not work as efficiently as they should. It’s very depressing. I thank God that I have Him to help me through all this.

Posted in Quality of Life, Tests | Tagged allergy testing, MITO, muscle spasms, pain, sinuses | Leave a reply

More Sinus Surgery

Day by Day with a Movement Disorder Posted on April 14, 2017 by DBApril 15, 2017  

Sinus Surgery

I had the CT scan this week, and it looks like I’m having more sinus surgery. My old ENT did the endoscopic FESS surgery to open up the sinus cavities on both sides between the eye and nose, plus the big ones under the eyes. He did not do anything with the sinus cavities above the eyes. But I’ve continued to have thick mucous post nasal drip since the surgery. That’s keeping my throat irritated, and I sound hoarse all the time. I feel yucky.

My new ENT showed me the CT images, and the frontal sinuses above my eyes are packed solid. He wants to do Balloon Sinuplasty this time, rather than endoscopic surgery.

Allergies

They did the allergy testing this week, too. I was relieved to find out that I do not have any raging allergies. I’m NOT allergic to cats! That’s a relief, since we have three and both daughters have cats. He said to go back on OTC antihistamines.

My neck is still recuperating from having to lie very still on my stomach on a firm procedure table for about twenty minutes. I can’t turn my head sideways that well, thanks to my fused vertebrae. I could not get in a comfortable position, so I just had to tough it out with considerable pain. I’ve been on muscle relaxers since then, trying to calm down my jangled nerves and muscles.

Deviated Septum

The CT scan also showed very clearly just how bad my deviated septum has gotten. He suggests I get that fixed at the same time I have the Balloon Sinuplasty. It’s still same day surgery, but he does it all in the hospital, rather than an out patient clinic. I much prefer that.

My first thought was to not have the septum repaired. My thinking was that I’ve lived with it for 74 years, so I should just leave it alone. But when I did the research online I discovered that a deviate septum can get worse with age. It does make sense, too. Our nose and ears continue to grow as we get older (ever noticed old men with huge noses and ears?). And the facial muscles eventually droop, too. That combination can lead to the deviation getting worse over time. Also, year before last my leg buckled out from under me and I fell flat on my face. I thought at the time I was very lucky that I did not break anything – now not so sure that I didn’t squish my nose then and make the deviation worse.

Blocked Tear Duct

My new ENT does not deal with the tear ducts, so I’ll have to find an Opthalmologist to get my blocked tear duct opened up. I’ve decided to get that done first and then have the Sinuplasty and Septoplasty.

I can’t say I’m looking forward to all this poking, prodding, and cutting. But I’ve been dealing with yucky mess in the back of my throat, hoarsness, facial pain, and a dripping eye for close to two years now. It’s time it was all fixed.

Posted in Surgery | Tagged Balloon Sinuplasty, deviated septum, fess, pain, Septoplasty, surgery, tear duct | Leave a reply

Tear Duct Is Better?

Day by Day with a Movement Disorder Posted on March 26, 2017 by DBMarch 28, 2017  

Tear Duct

I wouldn’t say it’s completely open, but my tear duct appeared to be better this morning. I went to my eye doctor for the last time with this issue on Friday, I thought. The infection appeared to have finally calmed down. I definitely didn’t have the big painful knot in the corner of my eye then.

But I DO have a small knot there that has puffed up during the day today, so will be calling the eye doctor in the morning to see if I should go back on the antibiotic eye drops.

He used a syringe (no needle of course) of fluorescent liquid in the tear duct openings, top and bottom, and tried to find signs of the bright yellow color in my nostril. No such luck. Then he pushed a whole syringe of saline through. I could feel the pressure, although he had numbed my eye. Still no fluorescent signs in the nostril.

BUT, when I pressed on my eye to wipe off all the liquid around my eye – it squirted out my nostril! He thinks the pressure of pushing the saline opened the duct up at least part way.

Since it’s puffing back up some today, I’m wiping tears more than I was, too, draddit. Hopefully this is swelling from the poking he had to do Friday, and not more infection.

Antibiotics

I’ve now been off oral antibiotics for two weeks and antibiotic eye drops for three days. My digestive system appreciates that, for sure. Of course I’m still taking the probiotics. I am very thankful that all these antibiotics have not caused any tummy issue. I used Zofrin and the probiotics to protect my system. The Zofrin was causing constipation, so I went back on my MiraLax to combat that. So at least my gastric system is happy.

ENT

I’m ready to make an appointment with my new ENT. The eye doc has done all he can for this mess. I’m still having thick mucous discharge down the back of my throat. I’m clearing my throat constantly, just as I was all last year. And that’s keeping my throat irritated and my voice hoarse.

MITO

One thing’s for sure, when you have a mitochondrial disease, you never know how your body is going to react to any situation. I’m just thankful for doctors who understand that I’m not a typical patient!

 

Posted in Quality of Life | Tagged antibiotics, healing, Miralax, MITO, pain, probiotics, sinuses, swelling, tear duct, Zofrin | 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

Sinuses Almost Healed

Day by Day with a Movement Disorder Posted on December 2, 2016 by DBDecember 2, 2016  

Almost Healed

I’m glad to say that this time my ENT is pleased that my sinuses are almost healed. He dibreded (scraped and used suction to remove) a little on the same side that was still heavily scabbed two weeks ago.

I will soon finish the steroid powder added to the neti pot saline solution that I’ve been doing twice a day for the last 3 weeks. I wasn’t seeing any blood any more when I washed my sinuses out. But I’m seeing a little now, thanks to the dibreding.

Mucous Discharge

I am still dealing with an almost constant discharge down the back of my throat. The mucous no longer looks infected, but it’s thick and unpleasant. And it’s keeping my throat irritated. So he wants me to use Flonase nasal spray until I see him again in six weeks. At that time he will make a decision on whether or not to pursue allergy testing.

This has been a much longer and drawn out process than I had expected, even though I had done considerable research prior to having this surgery. Do I regret having it? No, I can breathe now. But I’ll be glad when this recovery is completed!

Posted in Surgery | Tagged Flonase, pain, sinuses | Leave a reply

FESS Healing Continues

Day by Day with a Movement Disorder Posted on November 18, 2016 by DBNovember 23, 2016  

I went to my ENT again today, and this time he says the healing is not progressing as rapidly as he would have liked. He didn’t seem overly concerned, but I have more hard scabbing than he would have liked to see. Cleaning all that out was even more unpleasant than last week. I hadn’t expected that, although I had taken a Lortab ahead of time, just in case.

I told him about the compounded Steroid powder not dissolving well. He wasn’t concerned about that, as there was no sign of any solids accumulating in the sinuses. And he didn’t seem surprised that the small sinus cavity between my eye and nose is still sore. I’m going to use the neti pot in between the washes morning and night that have the steroid added to the saline powder. Hopefully that will help the scabbing dissolve better and not have my sinuses all dried out.

On a positive note – I can definitely breathe better. It’s been so long since I could take a deep breath without my nostrils sucking shut – I guess I’d just gotten used to it. Quite the rush of air now when I take a deep breath.

Posted in Surgery | Tagged fess, healing, neti pot, pain, recuperation, scabbing, sinuses, surgery | Leave a reply

Sinus Surgery Recuperation

Day by Day with a Movement Disorder Posted on November 11, 2016 by DBNovember 11, 2016  

Week ONE Post-op Recuperation

The first week of Functional Endoscopic Sinus Surgery recuperation was far from pleasant. I was in a considerable amount of pain for several days. I took Hydrocodone every six hours, but it was not enough to completely control the pain. I had a very yucky bloody discharge mostly down the back of my throat. And I also had a couple of nosebleeds. I was told to use Afrin spray to stop the nosebleed, and that worked both times.

The yucky mess down the back of my throat, as well as the mouth breathing, plus the irritation caused by being intubated, kept my throat really sore and my voice very raspy. And it killed my appetite. I didn’t feel like chewing, so I drank chocolate protein drinks and stuck with soft foods for several days.

Using the NeilMed nasal irrigation was extremely unpleasant and messy the first few days, but toward the end of the first week the bloody mucous and dissolvable packing had mostly been flushed out. The yellow mucus post nasal drip I’ve had for months continues to be present.

My biggest problem was the way my allergies went crazy three days after surgery! I started SNEEZING BIG TIME! Of course I had been warned to not sneeze through my nose, so I was “coughing” the sneeze out my mouth. Along with the sneezing, I had that horrible “I’m about to sneeze” feeling most of the time. I called my ENT office and was told to take Zyrtec twice a day as long as I needed it. I stayed on that double dose for a week, and that’s much better now.

Week TWO Post-op Recuperation

I had my first FESS post-op appointment yesterday on Day 10. They numbed my nose and then used a suction tool to debride the surgical sites inside the nostrils. I had read plenty on the internet beforehand, so I knew to take a Hydocodone before the appointment. Even with that in my system, it was not easy. It was an odd sort of pressure sensation that made me feel like he was pushing directly on my brain – not exactly pain, but I was clenching my fingers into my leg. I have to have it done again in ten days and probably several more times past that.

My voice is beginning to sound more normal now. I’m still sneezing some, so I’m on the Zyrtec directions dosing now, taking it just once a day.

Recuperation On Target

My ENT is very pleased with how the sinuses look. He said the healing was right on target. I’ve been SO very careful to follow all the post-op directions, it pleased me that he was happy with the way it all looked inside. And I can tell already that breathing through my nose is SO much easier!

Posted in Surgery | Tagged allergies, ENT, pain, recuperation, sinuses, surgery | Leave a reply

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