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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: healing

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

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

Sinuses Healed 85%

Day by Day with a Movement Disorder Posted on February 2, 2017 by DBFebruary 2, 2017  

Old ENT

I went back to my ENT this week, and he says one side of my sinuses is completely healed and the other is 85% healed. I’m still adding the antibiotic powder to my twice daily nose wash for another week. And he has dismissed me, since this ENT does not accept my new insurance.

He did debride a little in the side with scabs, but I was prepared this time and took a Lortab ahead of time. That helped bear the discomfort a lot.

New ENT

I have made connections with another ENT who accepts my new insurance and has credentials in my hospital. I’ll see him in a couple of weeks. I’m glad I had the FESS surgery almost four months ago to have my sinus cavities opened up. But I’m still swallowing gunk constantly. And I’m still having on again, off again issues with my right eye hurting and discharging. Hopefully he will be more aggressive with clearing up this sinus drainage I’ve had for over a year.

I have diligently followed the neti pot routine every day. My MITO has turned this routine healing process into a challenge, because my cells do not create energy properly – and that translates into very slow healing.

I’m feeling very thankful to God that I’m gradually healing, as I have certainly prayed for it!

 

Posted in Surgery | Tagged debride, ENT, healing, MITO, prayer, sinuses | Leave a reply

MITO Messing with Healing Process?

Day by Day with a Movement Disorder Posted on January 11, 2017 by DBJanuary 11, 2017  

I had FESS endoscopic sinus surgery about ten weeks ago. The surgery went well, but the healing process has not gone as well as expected.

MITO Messing with Healing

There’s no way to be sure, but my ENT thinks it might be my MITO messing with the healing process. By now the mucous membranes should be all back to normal, but instead, I still have scabs and crusting that he has to debride (remove the scabs so the raw edge has a chance to heal correctly). I wasn’t expecting any more of that and hadn’t pre-dosed with pain meds for my appointment today. I sure wish I had.

Post Nasal Gunk

I still have thick mucous draining down the back of my throat. That’s keeping my throat irritated, and my voice doesn’t sound right. I can’t taste food as well I did before, either. He thinks that discharge is a result of the lining not healing properly. And of course, when the nose is not working properly, food doesn’t taste the same.

Breathing Easier

I CAN say that I can now breathe better than I have in years – so opening up the sinuses has stopped the clogged sinus issue I’ve dealt with for a long time.

Back on Antibiotics

He has put me back on a stronger antibiotic. I am supposed to add it to the daily nasal wash. With only a few weeks here and there without them, I’ve been on one antibiotic or another for over a year now. I’m taking Theralac probiotics to prevent most of the digestive issues that causes.

I see him again in three weeks. I’ll take my pain meds before hand, that’s for sure! I’ll also spend the next 3 weeks trying really hard to get super nutrition – I’ve strayed a good bit from my normal eating habits, thanks to the holidays. Also, not being able to taste foods very much has triggered me to eat more of some things that I normally wouldn’t, because I can still taste them – like popcorn LOL.

So I’m praying for a good report in three weeks!

Posted in MITO, Surgery | Tagged antibiotics, healing, MITO, nutrition, post nasal drip, surgery | 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

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