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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: allergy testing

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

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

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