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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: skin cancer

Doctors, Doctors, and More Doctors

Day by Day with a Movement Disorder Posted on June 20, 2012 by DBMay 9, 2016 3

I’ve all but lost track of how many doctor’s appointments I’ve had since I last wrote. I’ve been to my Gynecologist twice, a Urologist, my Podiatrist, three Neurologists – one of those at the Muscular Dystrophy Clinic, as well as my own Dermatologist twice and a Dermatology Surgeon.

The upshot of all those visits is that the Neurologists can’t tell me any more than the UAB Neuromuscular specialist told us after the muscle biopsy results came back – there’s no treatment and no cure. I can’t even get any advice from them on beneficial supplements or my nutrition. So we have basically fired the UAB Neurologist and the MDA Neurologist and don’t intend to return to them. I will continue to see my own Neurologist regularly, however, as I need to touch base with someone from time to time for prescription refills and to have someone I can get an appointment with when needed.

I’ve been having urinary difficulties ever since my muscles started weakening, so I finally decided it was time to try to get help. My Gynecologist referred me to a very nice Urologist, and I have confidence that he will find a way to help me deal with these problems.

I’m spending hours a day doing my own research on vitamins, minerals, and herbs that might help maximize my cellular energy production and minimize oxidative stress at the cellular level. It’s a good thing I have a chemistry background. I never thought I’d have a use for that Biochemistry course I took almost 50 years ago! LOL! Not that I actually remember any of what I learned back then, but it has made reading all these online papers a little easier.

I’ve found several excellent books that I’ve read from cover to cover more than once, making notes about combinations of nutrients that work synergistically to improve energy production in the cells and decrease the level of gene mutation. And I’ve also wasted my time on a few books that turned out to be selling some proprietary program, rather than really trying to educate.

Thanks to my research, I’ve been gradually adding a variety of megadose vitamins, enzymes, and minerals, as well as continuing to use the herbal formulations. And all these capsules, powders, and tablets are showing a positive result. I continue to do my physical therapy, but I seem to have plateaued as far as how much I’m able to do at one time. The muscle fatigue takes over pretty quickly. But I definitely feel stronger walking in public than I did a few months ago. And my neck and back pain are more under control than they were. I was able to find a back support that stabilizes my neck and head, so I can manage sitting in a church pew a little easier, and the Neurontin and Robaxin help with the pain, too.

Mitochondrial diseases are caused by mutations of the DNA in the mitochondia, so it didn’t come as a complete shock that my Dermatologist found a squamous cell carcinoma on my face. I had Mohs surgery the next week, and it seems to be healing very well. I had to return to the Dermatologist last week, however, when a patch of skin very close to the scar became painful. The biopsy showed that spot was precancerous, so that area had to be frozen.

Next week I see my Opthamologist for my yearly exam. The retina, particularly the macula, is extremely susceptible to oxidative stress, so it’s very important that I do all I can to keep my eyes as healthy as possible.

My Diabetes continues to be under good control with diet, but I have been gradually gaining weight for the last few months – something I’m not happy about at all. I know some of it is water weight, because that’s a known side effect of some of the nutrients I’m on – but it’s not all water weight by any means. I think some of these supplements have increased my appetite, and my will power isn’t holding up too well to the urges. That’s definitely an area I need to work on right now.

I’m very thankful that I have been able to improve as much as I have in the last few months. I know a whole lot more about the process of cellular nutrition and ways to slow the genetic mutations. My hubby and I have faith that God will give us the wisdom to make good choices for supplements, exercise, and nutrition, and that He will guide the decisions my doctors make.

Posted in Medicines and Supplements, MITO | Tagged Dermatologist, exercise, genetic, incontinence, Mitochondrial Myopathy, Neurologist, nutrition, pain, skin cancer, vitamins, weakness | 3 Replies

Messing Around

Day by Day with a Movement Disorder Posted on January 30, 2008 by DBMay 7, 2016 4

Well, I went to the Dermatologist Monday, and other than a small flareup of my Acne Rosacea, he didn’t find anything worrisome. He did say I had some sun damage on my forearms … But I’ve had almost 65 years to accumulate that damage, so it’s not really surprising. I did the sunbathing stuff in high school and college, but that’s just about it. I did have some pretty bad sunburns during that time period. Of course, there were no sunscreens then.

I’m finding the cervical collar to be very helpful, but it hurts to wear it. I’ve made about all the adjustments that I can to make it work better on my short neck, but it is still uncomfortable. Let’s face it — I have a small face and CPAP and Collars were just not meant for someone my size. It’s a shame my hips and tummy haven’t figured out they are supposed to be petite, too! LOL

I’m not getting as much use from the TEN’s as I thought I would, because it’s trouble to hook it all up. That old apathy thing going on again. I need to get in the habit of putting it on before I eat lunch or ride in the car. Those seem to be my worst triggers for pain. It’s the leaning forward with no support posture that makes mealtimes hurt. For breakfast and supper, I’m usually on the computer on the sofa, with the laptop in my lap, eating in between typing. Yes, my keyboard needs cleaning out something terrible, but I don’t know how.

I’ll try to do better by the TEN’s today. It’s rented for one month, and then, if I think it helped, insurance will pay for it. Seems fair enough to me.

I got just plain disgusted the other day, and told hubby I’m going to go off of all my PD meds for awhile, just to see how I do. I made a short experiment with that right around Christmas, but the holidays weren’t really a good time to be experimenting, so it was a very, very short time that I was without the meds. I intend to stick this out for at least a week, maybe longer. I just want to see once and for all if the meds are doing me any good at all.

I worked hard all day yesterday getting more of our plush animals and dolls into our own Dirty Butter Plush Animal Shoppe, so I can more easily sell directly. I’ll still be on eBay, but I need to wean away from depending on that source completely for sales. EBay messes with things too much, and changes things at a whim. At least with my own site, I know exactly what’s going on. Course, right now, not much IS going on!

I started working on tax forms I have to fill out for the paid caregiver we had with Daddy. Once I do all his taxes, and the Estate’s taxes, and pay what is owed to the IRS, we can close out the Estate bank account, and invest the money. It will be good to see the end of that chapter of my life.

Hubby continues to be supportive and helpful, I feel better, I don’t have any signs of skin cancers, and I’m accomplishing something with our sales. I’d say that’s a pretty good sign that the apathy is lifting. I sure hope so.

Posted in Uncategorized | Tagged Acne Rosacea, apathy, cervical collar, Dermatologist, Income tax, settling an estate, skin cancer, TENS | 4 Replies

Two Ruptured Cervical Disks – No Wonder I’m Hurting!

Day by Day with a Movement Disorder Posted on December 16, 2007 by DBDecember 16, 2007  

I talked with my Orthopedist’s PA the other day, and she confirmed what I already knew. The disks are bulging on the two cervical vertebrae that are degenerating, and that’s what is causing the pain and stiffness. She doesn’t want to make an anesthesiologist appointment to get an epidural there until I have a chance to talk to my Neurologist. I see him Wednesday. I did ask that she talk to my Neuro’s nurse, rather than expect me to relay messages. It seems that the ER did not send any information to him about my time in the ER in September, when I had the horrible drug interaction with a steroid shot. So his nurse was completely surprised to hear I had a bad reaction.

So, we’ll be going to the hospital to sign the release form to get the records to take to my Neuro.

I continue to be concerned and in prayer for several Parkie buddies on the PatientsLikeMe site, who have been diagnosed with skin cancers. One has Melanoma, and the other has Squamous Cell Cancer. Both were caught early, with every reason to believe they will be just fine. We are all praying for their recovery.

There is another woman on there who’s brother also has PD, who had unrelated surgery, and to quote her – “his brain is mush.” She said he has already tried to leave the hospital. When I thought I was going to have to have surgery back a few months ago, I learned all kinds of scary things about how difficult it is for PWP to have any kind of anesthesia without serious side effects. Also, it is very difficult to get hospitals to keep the PD meds coming on time. And that can mean the difference between being mobile and thinking normally, and not.

I wore my new “Sunday” shoes today, and I really like them. They help with my balance, they feel good on, and they are unobtrusive. I doubt if anyone has even noticed that I’m not wearing dress shoes. I don’t feel the least bit self conscious in them, so if someone has noticed them – I don’t care.

I am having one problem, though, that came unexpectedly. Last night I noticed a red itchy place on my wrist where the back of the Timex watch is against my skin. I had noticed that the skin was getting slick and shiny there a couple of weeks ago, so I started taking it off at night to go to sleep. Evidently I didn’t heed the warning in time, as I now have a nice round ringworm there. It’s been holding too much moisture against my skin, as it is fairly tight. It’s a big man size watch, and not particularly comfortable, but I was willing to tolerate it, because it is so helpful. I may end up taking the band off, and just keeping it in my pocket.

I have not been able to do much exercising for the last month, partly because of my neck, but mostly because my DH over did it and his Sciatica is acting up again. I’ve been so busy working on the requests on our Plush Memories blog that I have been sitting still more than I probably should be. I’ve not been doing the Tai Chi, either. I know I really need to get back with a scheduled exercise program, the way I was before.

So, some things improve, while other new aggravations begin. Not so different than what happens to everyone, right?

Posted in Uncategorized | Tagged balance, brain fog, cancer, drug interaction, epidurals, exercise, freezing, herniated disk, melanoma, muscle spasms, Neurologist, pain, PatientsLikeMe, prayer, Quality of Life, skin cancer, Tai Chi | Leave a reply

7+ Hours Sleep Again!

Day by Day with a Movement Disorder Posted on October 30, 2007 by DBOctober 30, 2007 8

I was able to stay in the recliner for over 7 hours last night! I’m still getting up several times to go the bathroom, but at least now I’m able to get back to sleep. I figure I’ll try turning the screw to advance my lower jaw maybe one or two more nights, and that should be enough. I’m making the Sleep Study appointment today to see if it’s controlling the Sleep Apnea properly. If it’s not, I can always advance it some more while they monitor it, until I find the right spot.

I will get an appointment for the flu shot today, too.

I’m also going to make an appointment with a Dermatologist today. I don’t want to ignore the fact that Parkies have a higher rate of Melanoma than the general population. Particularly since I’ve inherited a tendency to have lots of moles, some quite large, from both of my parents.

I’ve never been to a Dermatologist before, but I’ve learned my lesson and intend to get one who uses the hospital I like. There is a lady Dermatologist associated with my preferred hospital, and I think I would be more comfortable having every square inch of me examined by her, rather than by a man.

My inability to control my emotions is still a very aggravating problem. I started looking for some important insurance paper work this morning, and couldn’t find it. I’ve kept up with that stack of papers for several years now, but when I started to make a phone call referring to it, it was nowhere to be found. After searching everywhere I might have filed it, then looking in places I should not have filed it, I fell apart. Blubbering like a baby and getting DH all upset trying to console me. This awareness of my mental abilities deteriorating right before my eyes is extremely disconcerting.

I finally did find the insurance papers I needed, stuffed in the file folder with the information about Pop’s monument that I had worked on the same day I had been working on the insurance. This is some paperwork left over from when DH’s Pop died, as we were the executor of his estate, too. Not long after he died my dear hubby had colon cancer surgery, so some of the less urgent parts of settling Pop’s estate just got pushed to the background. Now I’m trying to finish all of it up, and get my Daddy’s all finished, too.

So, all in all, it’s been a productive day, as I was able to get done what needed to be done toward cashing the insurance policy, and I’m going to call and make the appointments just as soon as the doctors’ offices get back from lunch.

Once this insurance policy is dealt with, the only things left to take care of are the monuments. Pop’s should have already been engraved, so when I talked to the cemetery people, they were extremely apologetic that it had not already been done. And I haven’t even started on getting Daddy’s information added to the headstone.

I’ll be glad to have all this paperwork finished! Daddy’s estate will get out of probate at the end of November, and I need to be through with everything by then, so I can quit stressing over it.

Posted in Uncategorized | Tagged dental appliance, Dermatologist, emotional lability, flu shot, insomnia, insurance, melanoma, Parkinson's, Quality of Life, settling an estate, skin cancer, Sleep Apnea, Sleep Study, stress, TAP | 8 Replies

Requesting Your Prayers

Day by Day with a Movement Disorder Posted on October 27, 2007 by DBOctober 27, 2007 6

One of the Parkies that I have become friends with on the Patients Like Me site has just had a positive diagnosis of skin cancer, and she is to have surgery on the 14th of November for a lesion slightly bigger than a half dollar.

Now another PWP on the Patients Like Me site has posted that she is getting the results this week on a biopsy for a possible skin cancer on her leg. That’s 2 out of less than 700 who have reported it from the PLM Parkinson’s membership.

The increased risk of developing Melanoma is one of the characteristics of Parkinson’s that few people are aware of. I certainly was not.

The one to have surgery goes by the name of knoxgal, and the one to get the biopsy results goes by pokie too. I know they would both appreciate your prayers on their behalf.

Looks like I’ll be making an appointment with a Dermatologist to get checked over from head to toe! Great, another doctor!! But I do think it is wise to have it done, under the circumstances, as I am covered with moles, thanks to my parents.

Posted in Uncategorized | Tagged Dermatologist, melanoma, Parkinson's, PatientsLikeMe, prayer, skin cancer | 6 Replies

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