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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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Dacryocystorhinostomy Tear Duct Surgery

Day by Day with a Movement Disorder Posted on June 3, 2017 by DBJune 3, 2017  

Well, I saw the Oculoplastic Surgeon at the Callahan Eye Center in Birmingham this week, and he scheduled me for dacryocystorhinostomy surgery (DCR) in August. He will do the external type of surgery, which means it will be Same Day Surgery. This method has a higher success rate than the endoscopic way. But it means he will make an incision between the tear duct and my nose and cut a hole in the nasal bone. I don’t wear makeup, so there will be a small scar. But I can handle that – maybe one of my wrinkles will hide it LOL.

It’s a relief to finally have at least this surgery scheduled. And I have an appointment next week with my ENT to schedule the balloon sinuplasty and deviated septum surgery. I hope I can get that done soon, so I have time to heal before the DCR surgery.

I’m looking forward to this long drawn out process being over and done with. I’ve been having constant sinus drainage for about a year and a half now. And the tear duct has been painful and swollen since last Summer.

Posted in Surgery | Tagged dacryocystorhinostomy, oculoplastic surgeon, surgery, tear duct | 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

Ophthalmologist Referring Me to Oculoplastic Surgeon

Day by Day with a Movement Disorder Posted on April 26, 2017 by DBApril 26, 2017  

Ophthalmologist Appointment

I saw my new Ophthalmologist for the first time yesterday. Of course I had to go through all that’s been happening to my sinuses and tear duct for all of last year. I told him about my general health issues and that I had had lachrymal implants a couple of times several years ago to treat dry eye. The implants fell out, but stayed put long enough to give the eye a chance to heal. Or so I thought.

This doctor pressed hard for what seemed like forever right on the spot in the corner of my eye where the swelling has been, and where it is very tender. It was all I could do to make myself lean into the head device, despite the pain.

He thinks I have one or more of the lachrymal implants logged in my tear duct. Once again my body is the exception to most rules. I never know when MITO is going to rear its ugly head and cause problems with my healing process.

I explained to him about my upcoming sinus and septum surgery. And I asked his opinion about what should be done first. Hubby is having a vein procedure done next week, so I don’t want to have any procedure done until after he is well.

He said there is no time push for this to be done. He made an appointment for me with the Oculoplastic Surgeon for a month from now. And he also re-filled the eye drop prescription my Optometrist had me on while he tried to clear up the infection in the duct. After all that hard pressing he did, I’m sure I’ll need the drops to calm down the tissue again.

Oculoplastic Surgeon

So what does this kind of eye doctor do? They operate on the lids, among other things. He will likely make a slit along the top edge of my bottom eyelid and attempt to remove the blockage. He may find implants or maybe just scar tissue. Whatever it is, it needs to come out.

Then he will put a stent in the tear duct to keep it open. My Ophthalmologist says this is a relatively simple procedure. He said that sometimes they do it right in the doctor’s office. I sure hope it’s as simple as he tried to make it sound. It makes me squeamish and apprehensive just thinking about it.

ENT

I’m calling my ENT today to try to determine when I will have the sinus and septum surgery. Looks like we’re going to have a very busy calendar for the next month or so!

Posted in Surgery | Tagged lachrymal implants, MITO, oculoplastic surgeon, ophthalmologist, tear duct | 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

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

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

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

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