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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: allergies

CT Scan and Allergy Testing

Day by Day with a Movement Disorder Posted on April 1, 2017 by DBApril 1, 2017  

CT Scan

I saw my new ENT Thursday. He has read through the reports from my old ENT. And he wants me to have another head CT scan to see what my sinuses look like now. Last one was in October, before I had the FESS sinus surgery. As soon as insurance approves, I will have the CT scan and allergy testing.

Allergy Testing

He thinks I’m still dealing with infection, as well as allergies. So he scheduled me to have allergy testing in two weeks. He took me off of all antibiotics, steroids, and antihistamines until after the allergy testing. It took just one day for my tear duct to puff back up when I stopped the antibiotic eye drops. It’s not painfully hard the way it was, but it’s noticeably swollen. And that means a lot of my tears are coming out of the eye, instead down into my nose.

Praying No More Surgery

He also mentioned the possibility of having Balloon Sinuplasty done. Hopefully the CT scan will not indicate a need for that. I didn’t tell him just how much I’m hoping I don’t have anything else like surgery done. The thought really scares me, considering how gross the recovery was for the FESS surgery. No need to say anything until the CT scan results are back. But of course I’ve been researching the Balloon Sinuplasty surgery.

I’m praying that dealing with my allergies will be sufficient to stop this long term sinus problem. I’ve been plagued with thick post nasal drip for well over a year now. I’ve been hoarse from all the drainage for months. And really, I’ve had sinus infections that were hard to get rid of for many years. That’s part of the reason why I’ve been sleeping in a recliner for many, many years. Between my lower back, my neck, and my sinuses – lying flat is just not an option for me.

Sneezing

I sneezed so hard and so many times a few days ago that I’ve aggravated my neck. The fused vertebrae really are complaining about the whiplash effect of those hard sneezes. So I’ve been taking Goody Powders until lunch time and Methacarbamol muscle relaxer later in the day. I’m also sleeping on a hot pad again. And when I have enough warning, I’m holding the back of my neck when I sneeze.

MITO?

It’s always hard to know what, if any, of my medical issues are MITO related. I do know for sure that it took my mucous membranes longer to heal properly from the FESS surgery. And I know that when I don’t feel well I REALLY don’t feel well. Everything seems to hit me harder than most people. I’m what people used to call “puny”.

So I’ll put up with the worsened allergy symptoms while I flush all the meds out of my system. If I’m not clear of antihistamines, antibiotics, and steroids when I have the allergy testing done – the results won’t be accurate. I’ll do what I can to keep my sinuses clear with the neti pot, and I’ll continue to pray for healing.

God is the true Healer – doctors only work for Him!

 

Posted in Tests | Tagged allergies, allergy testing, ct scan, God, healing, MITO, Mitochondrial Myopathy, prayer, sinuses | 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

Back to Methocarbamol – Not as Weak – Still in Pain

Day by Day with a Movement Disorder Posted on May 8, 2016 by DBMay 10, 2016 2

I’m finally completely off the Clonazepam and back on the Methocarbamol and Neurontin. And I have a Neuro appointment in June. I had hopes that the time off the meds, while I tried Clonazepam, would make them effective again – but no such luck. They take the edge of the pain, but don’t really stop it. But I’m not as weak as I was at my worst on the Clonazepam at least.

Sinus Infection

I’ve had a bout of sinus infection that caused one side of my face to ache like a toothache. In fact I actually went to the dentist, thinking I had cracked a tooth clenching my teeth in my sleep while I was still on the benzo. The x-rays showed it was more likely a sinus infection. So my doctor put me on an antibiotic. He also told me to stop using the regular OTC sinus medicine I’ve been using, as my blood pressure was way to high. He said to be sure I buy a brand that has HBP on the label, and we bought some on the way home from the doctor.

Antibiotics usually give me digestive problems, but this time it hit as nausea and vomiting. I ended up having to get the doctor to call in something for that. So I haven’t really had what you could call a normal week yet since being back on my old meds. I can still hope that the pain level will subside.

Muscle Pain

It’s hard to describe these pains – I call them traveling pains, for lack of a better term for them. I will ache in one place, say my shin, for 10 or 15 minutes, rub it for a bit  or use a hot pad on it, then it subsides and within a few minutes my other leg hurts in the calf. Repeating the rubbing and heat, and the next thing I know it’s my neck that’s hurting. A few more minutes and my arm hurts. This goes on all day long and all night long. In the daytime, as long as my mind is occupied, such as when I’m working on the computer, it usually doesn’t take over my awareness. But let me get still, like at church? It’s NOT comfortable. The same thing at night – I don’t sleep well, waking up off and on all night long trying to get comfortable.

The odd thing is, I remember waking up during the night screaming as a young child, begging for my Mama or Grandmother to rub my legs. They called it growing pains back then, but now I wonder if I wasn’t already having MITO symptoms.

Posted in Medicines and Supplements, MITO | Tagged allergies, antibiotics, antihistamine, decongestant, Gabapentin, HBP, High Blood Pressure, methocarbamal, Methocarbamol, MITO, Mitochondrial Myopathy, muscle spasm, muscle spasms, Neurontin, pain, sinuses, weakness | 2 Replies

Irritated Eyes and Digestive System – UGH

Day by Day with a Movement Disorder Posted on February 6, 2014 by DBMay 8, 2016  

I’ve been dealing with eye issues for the last few weeks. I figured it was just allergies, as I’ve had a runny nose, too, but I obviously didn’t have a cold. Lots of itchiness and feeling like I had an eyelash in my eye, and it was progressively getting worse. I reached a point where being in sunlight or in bright lights was very painful.

So off to the eye doctor I went, reluctantly, but I really didn’t have a choice. Turns out it was a bacterial infection, and he put me on antibiotic and steroid eye drops.

I was still very uncomfortable, even after I finished the bottle, so we went back to the doctor. I have a history of dry eye syndrome, so this time he plugged the lower tear duct holes with lachrymal implants. The purpose of these is to keep the tears from evaporating off the eyeball so quickly.

Thanks to my Mitochondrial Myopathy, we both agreed that the implants were a better choice than Restasis, the usual drug prescribed for this issue. The fewer toxins I put in my body the better. He had tried the implants some years ago, but they came out. At least they got me through the allergy season that had me irritated at that time. I’m hoping for the same good outcome this time.

I’ve also had constipation problems ever since we were stuck in a hotel for two days after a harrowing two plus hour drive to get out of the unexpectedly heavy snow storm that hit the South last week. I shouldn’t be surprised, considering both of our stress levels had to have gone through the roof while we crept along that three miles to the hotel.

We weren’t able to eat what we normally would either, which I’m sure just added to the problem. But the reason I bother to mention this is the new LCHF diet I’m on makes me wonder if the constipation was more due to stress or to the drastic change in what I eat, particularly the huge increase in my fat intake. Time will tell whether it’s diet related, or just a blip caused by such an unusual week.

I know how to deal with the constipation, as that has been a recurring problem for many years. One of the ways my Mitochondrial Myopathy presents itself is a slow digestive process, called gastroparesis. But not being able to read for any length of time or work on the computer is bothering me greatly.

I pray that the implants stay in long enough to improve the quality of my tear production and heal my irritated eyeballs. And I hope the constipation problem was temporary and not caused by the LCHF lifestyle I’m trying very hard to live.

Posted in MITO | Tagged allergies, constipation, gastroparesis, high fat, lachrymal implants, LCHF, low carbohydrates, Mitochondrial Myopathy, Restasis | Leave a reply

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