Day by Day with a Movement Disorder

Making Progress

noreply@blogger.com (Dirty Butter) — Wed, 11 Apr 2012 15:26:00 +0000

I'm pleased to report that my exercises are actually showing improvement. My neck is still giving me trouble, but I have been able to add a small resistance to some of the neck exercises and still do 10 repetitions. I see this as a sign of progress. But I am particularly pleased with improvement in the leg exercises. When I started I could not do a straight leg lift with my left leg at all. It simply would not budge. Now I can raise it for 10 repetitions, although the muscle starts complaining after the first 5. That is a huge improvement! And I can tell that I'm walking better, too.

I'm now on many of the natural herbal versions of my vitamin and supplement routine, as well as taking the full Mito Cocktail regimen. There's really no way to be sure if the muscle improvement I'm experiencing can be attributed to the exercising, the supplements, or a combination of both. I assume it's a combination of consistent exercising and the high powered doses of vitamins and cofactors I'm taking. Insurance won't pay for any of these supplements, so to say the least - they're expensive. But less pain and my increased energy make it worth it to us.

I continue to read everything I can get my hands on about vitamins and supplements, and I've learned a lot and been reminded of much I had already read about. I am now taking a low dose of Prozac, and my Neurologist prescribed Neurontin for pain, so maybe my improved outlook can be attributed to that - but I'd like to think I'm feeling better because I AM better! Either way, I'll take it!

Hocus Pocus Dominocus

noreply@blogger.com (Dirty Butter) — Fri, 30 Mar 2012 22:28:00 +0000

I did something the other day I would have never thought I would ever do. I went for an herbalist consultation.

You have to understand that I have a science background, having taught Chemistry and Physics. I've been to a Chiropractor within a doctor's office a few times over the years, but never felt comfortable doing it. So making an appointment with this person was a real leap for me. But you also have to understand that hearing the words from your doctor - there's no treatment and no cure - leaves you looking in different directions for help.

So, I did a lot of online searching about this particular herbalist and was impressed with what I read. I'm certainly not opposed to medicating with natural substances - I've been taking the Indian herb Turmeric for years at the recommendation of hubby's Oncologist. After all, part of the Mitochondrial DNA mutations I have were caused by some of the prescription meds my doctors previously had me taking, so there's no guarantee that common prescriptions are safe for everyone.

But I was extremely skeptical about HOW the process of deciding what I needed would be determined.

It's called Applied Kinesiology, and it sounds like something that could win the QUACK Award of the Century! But it wasn't invasive in any way, and we are at our wits end trying to find someone who will help with deciding what vitamins and supplements would help me. Through research on the Mito sites I've gradually added the supplements recommended in the Mito Cocktail, with no real way of knowing if we're wasting the money on them or not. Plus over the years I had gradually added a bunch of antioxidants and vitamins, trying to improve my general health. We'd also improved our diet considerably, so now we eat a large number of Super Foods, with a good many being raw.

So we're desperate for some guidance with what to spend our money on and what not to waste it on.

I can honestly say that we DID see an obvious strength or weakness in my muscle strength when holding in turn each of the vitamins and supplements I've been taking. (There was absolutely NO attempt to test my prescriptions, or to imply that I should not continue to use them or stop seeing my doctors.) After "testing" my box of supplements, the herbalist proceeded to test a variety of different herbs and vitamins on me, noting those where my muscle strength was the greatest.

After about an hour of this process, we were given a list of specific vitamins, supplements, and herbs that were supposed to be more affective for me than some of those I had been taking. But most of what I had been using were said to be effective and useful for me.

We left with the list, and I spent the next day researching each of these recommendations, checking for side effects and possible interactions with my prescriptions and other supplements. As far as I was able to determine there should be no problems with any of them. I didn't order all that were recommended, but I did order several substitutions for over the counter versions of vitamins I had been taking, replacing them with herbal versions supplying the same vitamins more naturally.

So my new herbs should be arriving any day now, and I'll let you know in a month or so if I can tell any difference. Wish me luck!!

Doing What I Can

noreply@blogger.com (Dirty Butter) — Thu, 15 Mar 2012 14:36:00 +0000

I've had my final Physical Therapy session for my neck. I'm definitely not hurting as much as I was before going to him, but I still have a lot of pain after doing certain things and by the end of the day.

I end up in considerable pain by the end of every meal, because I have to take off the neck brace. It's too easy to choke with one on. I can't ride in a car for more than a few miles without beginning to spasm, even with the neck brace. Hubby had a brainstorm the other day, so we bought one of those egg crate mattress toppers. We cut a piece to fit inside a pillow case, and we now have that in the passenger seat, so my back and neck are more cushioned from road vibration.

We moved a recliner into my Sunday School classroom, so I can hopefully get to a point that I can sit there on Sunday mornings without having to use the neck brace. I didn't make it all the way through without the brace last Sunday, but it was a start.

We're scheduled to move back into the sanctuary on April 1, so I have a few more weeks of exercise before I have to deal with sitting in a pew without the support of a high back. That's still my goal - that I will be able to sit in the pew with the neck brace on all the way through the worship service. But if I have to lie down in the pew before the end of the service, I will. I'm not going to let this disease keep me from going to church!

As I understand it, they do the muscle biopsy in a muscle that is not severely weakened yet, which certainly explains why mine was done in my Deltoid arm muscle. The Physical Therapist gave me some leg exercises to gradually work on here at home, and I was shocked to find that my legs are as weak as they are. The hardest exercise for me is to lie on the bed with my toes pointed straight up and one leg bent. I'm supposed to pick up the straight leg 10 times. I can get my heel off the bed a little, but not enough to clear my calf away from the mattress. So it's now pretty obvious why walking is so hard for me. Hopefully, if I'm careful to work on this just a tiny bit each day, I can improve my leg strength over time.

I'm continuing to take a meal's worth of vitamins and supplements at meals and in between snack times - many of them are part of what's called a Mito Cocktail, and we're very careful to eat as many Super Foods a day as we can.

I'm drinking about 90 ounces of water or green tea sweetened with Stevia every day, as staying hydrated is very important. I've also started keeping a small hot pad in the small of my back set to the lowest heat - as any energy I use up staying warm is energy I don't have for my muscle, brain, heart, and digestive system cells.

I have a follow up appointment tomorrow with the same UAB doctor who diagnosed my Mitochondrial Myopathy. I have a LONG list of questions for him, so we're praying we get some answers.

WORLD RARE DISEASE DAY is TODAY!!

noreply@blogger.com (Dirty Butter) — Wed, 29 Feb 2012 15:01:00 +0000

TODAY is World Rare Disease Day!

As I was recently diagnosed with Mitochondrial Myopathy, I've been doing a lot of personal research trying to understand a disease I had never heard of until a few months ago. We have been told by the diagnosing Neuromuscular Specialist that there is currently no cure and no real treatment available.

The main symptoms that affect my Quality of Life are extreme muscle weakness and fatigue, but I also get Myoclonic jerks, I walk with an ataxic gait, and I have digestive problems, as well as memory issues. And I have Type II Diabetes that is under control with nutrition and weight control. Diabetes is another way that Mitochondrial Disease can manifest itself. In hindsight I suspect that my symptoms probably started showing up about 30 years ago.

One in 10 Americans is affected by a rare disease - that's over 30 million people. That's more than the total number of people living worldwide with cancer! There are more than 7,000 diseases classified as being rare, most of which affect children. I can't even imagine how parents must react when they are told their precious little one has a rare disease - and learn that 30% of the children diagnosed with a rare disease will die by their 5th birthday.

Most of these rare diseases are genetic in origin. There are no cures for these diseases, and only about 5% of these diseases even have a treatment. Less than half of the Rare Diseases have any kind of foundation, advocacy group, or community support group, because many of these diseases affect fewer than 100 people.

My own disease falls under the scope of the Muscular Dystrophy Association, so I do have knowledgeable people I can turn to for help. And online there is a the United Mitochondrial Disease Foundation, as well as MitoAction and several Facebook groups dealing with MITO diseases where I can go for information and support. You'll find me on FB in the 250+ member Mito Adults group - just ask on the group to join, if it would be a good fit for you.

So what about all the families dealing with one of these 3,000 or so Rare Diseases who have no support group at all?

You can help them:

VISIT the R.A.R.E. Project site and learn more. DONATE to help with research if you can.

LIKE and share the Global Genes Project Facebook page with your FB friends and be one of the hoped for Million who show their support for families facing one of these rare diseases.

WEAR jeans today to increase awareness of the need for more research and funding for genetic diseases. Hopefully your workplace is involved in Jeans for Genes as a MitoAction fund-raising effort today. But if not, you can still donate to these causes.

I Over Did It

noreply@blogger.com (Dirty Butter) — Sat, 25 Feb 2012 20:41:00 +0000

I've been going to the Physical Therapist for several weeks now, and I can see some improvement in arm strength. I have good days and bad days as far as neck and back pain go, so I'm still using the muscle relaxer and pain meds when I can't take it any more. I've also gradually worked up to using the TENS unit the better part of the day now.

Just to give you an idea of how little it takes to fatigue my muscles - I'm doing 10 pulls with bent elbows of the easiest tubing, 7 without any tubing with elbows at my side moving my fists out as far as I can to the side, 10 shoulder shrugs, and 7 head turns each way. These are all held about 2 seconds each. And that's it. The therapist doesn't want me doing any more than that. Some workout, eh? I do that twice a day, but on some of the worst days I just didn't feel like it was a good idea.

We're still getting out of the house most days, not just for PT and doctor appointments, because I need to walk to keep my leg strength up. Standing and walking mean I'm holding my head up, even though I use the soft neck brace most of the time when we're out.

Wednesday I just did too much. It's my own fault, because I didn't tell hubby my neck was bothering me as much as it was, so we didn't come home as soon as we should have. I won't make that mistake again. He and I have talked about it, and we've worked out a signal, so he'll know I need to go home (that won't upset him thinking something's terribly wrong).

The therapist said he could definitely tell I'd over done things and told me to take it easy for the next few days. He said it's not unusual for someone to over do when they're beginning to feel a little better.

I'm so thankful my hubby and family are supportive. It's sad when I read about people in the Facebook MITO groups whose families are unsympathetic. This is an invisible disease. I don't LOOK sick, unless I'm wearing the neck brace. And that doesn't telegraph my digestive and elimination problems, my cold and exercise intolerance, nor my memory issues.

Compared to others I've met online I'm very blessed to be as unaffected by my MITO as I am. I thank God for that.

Very Busy Week

noreply@blogger.com (Dirty Butter) — Fri, 10 Feb 2012 21:09:00 +0000

We had quite a week this week. With two Physical Therapy appointments, a Neurology appointment, a Podiatrist appointment, and a Hygienist appointment at the dentist, we've been very busy. And I'm really worn out. I'll be sure to not let the appointments end up like that again.

We go to the dentist regularly, but I've always had trouble keeping my mouth open wide all that time. Now I understand why, as my jaw muscles simply fatigue so much that it's very painful. And that has set my neck into spasms in the past. I sure didn't want that to happen right now, as painful as my neck has become.

I found out a long time ago that I could deal with any lengthy dental work better if I asked for a bite block. That wedges my mouth open without me having keep it open myself. So this time I asked for the bite block when I got my teeth cleaned, and it helped a lot.

The Hygienist said my gums were bleeding more than usual. But that didn't surprise me, since I'm now on a rather large dose of Coenzyme Q10. It acts like Warfarin, a blood thinner. So I guess the next time I have work done, I'll need to stop the CoQ10 ahead of time.

The Physical Therapist is spending most of my time there trying to relax my neck, shoulder, and back muscles with moist heat and the TENS unit, as well as some wonderful massages and some neck traction. As far as "exercise" I spend time in between the heat and massage sessions just "sitting". That doesn't sound like exercise to you I'm sure. But for me to sit unsupported with less pain in a regular chair without the neck brace is really exercise, because my neck muscles have to hold up my head all on their own. It was easier to do today than last time. So the little home exercises he gave me to do, plus what he's doing at therapy are already helping a little.

He set my TENS unit for my current needs and gave me a diagram of where my hubby will need to put the electrode pads. Hopefully that will mean I can use the TENS unit more and depend on the muscle relaxer and pain meds less.

So I continue to do what I can to improve my situation as much as possible.

First MITO Physical Therapy Session

noreply@blogger.com (Dirty Butter) — Mon, 06 Feb 2012 22:00:00 +0000

I had my first session with the Physical Therapist today since my Mitochondrial Myopathy diagnosis. I've been to this same PT facility many times over the years, starting back when we took my mother when she was recovering from a broken hip. She was in the full throes of Alzheimer's at that time, and they were super kind and gentle with her. His staff have helped me personally in the past with neck pain and difficulty walking.

So I knew if I called ahead of time and asked the director to call me and discuss my diagnosis before my first appointment - I knew he would do that. He actually called me on a Saturday! He said he had had several patients over the years whose ultimate diagnosis turned out to be Mitochondrial Myopathy, but that he would catch up on the current thinking about how to help me. He seemed confident that he could improve my neck muscle strength and alleviate the referred back pain I've been experiencing for some months now.

He spent the better part of 2 hours with me, asking lots of questions, and I could tell that he had truly been doing considerable research about Mito. I also shared with him some of the information I have found from MitoAction, too. His overall message to me was that he could help, but everything would have to be done very simply and slowly, with only a few minimal exercises at a time.

I'm to see him again this week on Friday, and he gave me a few extremely simple exercises to do twice a day for just a few repetitions. After spending some time with a TENS unit set up at very low volume with a large heat wrap around my neck at the same time, he then did a slow and very careful massage of my neck and back.

I asked very specifically if a reasonable ultimate goal for me would be able to sit in a regular chair and then the church pew for the 2 hours that Sunday School and church require. I currently take a muscle relaxer and pain med before going to church on Sunday, and I use the padded neck brace from the time we leave our house until we ear lunch. It's not considered safe to try to eat while in the brace, due to possible choking, besides the fact that it's very awkward to try to do so. I'm pretty much wiped out and in pain for the rest of the day.

Right now our church sanctuary is being renovated, and I sit in a regular chair in Sunday School, but I'm sitting in a high back upholstered chair from the vestibule during the church service we now hold in our Fellowship Hall. I explained that to him, and that I had recently had occasion to sit in another church on a padded pew, wearing the neck brace, for about an hour and a half and was in severe pain by the time we left.

He did not think I would ever be able to sit without head support through both Sunday School and church, even after PT. So that means we're going to have to make arrangements to get a wing back upholstered chair for my Sunday School classroom. Then hopefully I'll be able to tolerate sitting in a pew for the worship service without being in so much pain.

I had hoped he would say that in time he could rehabilitate my neck so sitting would not be such a problem, but it doesn't look like that's going to happen. I'm glad he expects to be able to help me some. I'm thankful for that.

If you've read this far, I hope you've followed some of the links about World RARE Disease Day on Feb. 29th and found some way to spread the word about the need for more research funds. If you can donate - thank you!!

World Rare Disease Day in 30 Days!

noreply@blogger.com (Dirty Butter) — Mon, 30 Jan 2012 13:37:00 +0000

Feb. 29, 2012 will be World Rare Disease Day, and I'm joining other bloggers to raise awareness about rare diseases.

As I was recently diagnosed with Mitochondrial Myopathy, I've been doing a lot of personal research trying to understand a disease I had never heard of until a few months ago. Different sites include certain types of Mitochondrial Myopathy on their list of Rare Diseases. I don't know if my type has been classified or not, but that's on my list to ask about when I see my Neurologist. We have been told by the diagnosing Neuromuscular Specialist that there is currently no cure and no real treatment available.

The main symptoms that affect my Quality of Life are extreme muscle weakness and fatigue, but I also get Myoclonic jerks, I walk with an ataxic gait, and I have digestive problems, as well as memory issues. And I have Type II Diabetes that is under control with nutrition and weight control. Diabetes is another way that Mitochondrial Disease can manifest itself. In hindsight I suspect that my symptoms probably started showing up about 30 years ago.

One in 10 Americans is affected by a rare disease - that's over 30 million people. That's more than the total number of people living worldwide with cancer! There are more than 7,000 diseases classified as being rare, most of which affect children. I can't even imagine how parents must react when they are told their precious little one has a rare disease - and learn that 30% of the children diagnosed with a rare disease will die by their 5th birthday.

Most of these rare diseases are genetic in origin. There are no cures for these diseases, and only about 5% of these diseases even have a treatment. Less than half of the Rare Diseases have any kind of foundation, advocacy group, or community support group, because many of these diseases affect fewer than 100 people.

My own disease falls under the scope of the Muscular Dystrophy Association, so I do have knowledgeable people I can turn to for help. And online there is a the United Mitochondrial Disease Foundation, as well as MitoAction and several Facebook groups dealing with MITO diseases where I can go for information and support. You'll find me on FB in the 250+ member Mito Adults group - just ask on the group to join, if it would be a good fit for you.

So what about all the families dealing with one of these 3,000 or so Rare Diseases who have no support group at all?

WEAR jeans on Feb. 29th to increase awareness of the need for more research and funding for genetic diseases. Encourage your co-workers to get involved in Jeans for Genes as a MitoAction fund-raising effort on Feb. 29th.

READ some of these blogs supporting World RARE Disease Day, many sharing what life is like with a rare disease.

Battling a Cold

noreply@blogger.com (Dirty Butter) — Tue, 17 Jan 2012 01:53:00 +0000

I've been battling a doozie of a cold the last few weeks, the first one I've had in years. Knowing I have MITO I've been careful to watch for any bacterial infection. As long as it was just the cold virus there wasn't any point in going to the doctor. We've kept the fluids going big time, and I've been depending on Thera Flu, Mucinex, and Robitussin cough syrup to deal with it. Until a couple of days ago, it did look like I was over the worst of it.

But yesterday I started coughing up blood streaked yellow mucus, and I knew that probably meant it had become a bacterial infection. So I saw my General Practitioner doctor today. We talked at length about Mitochondrial Myopathy, and I gave him a copy of the Table of Reported Drugs with Mitochondrial Toxicity from MitoAction. He asked me lots of questions and said he would be doing some research, too. I really like this doctor. I've been using him for years, and he is the perfect example of a doctor who makes me feel like I am the only patient in the office. I never feel rushed.

He prescribed a codeine cough syrup and an antibiotic Cpak, so I expect to be feeling better soon. This cold has really taken a lot out of me. That's not surprising when you realize that my cells are working on low energy to fight it.

This doctor visit is a perfect example of why having a definite diagnosis is helpful, even if there is no treatment or cure. The doctor was able to go over the list of antibiotics I should avoid and choose an appropriate one for me to take.

Mitoland - A Guide for Mitochondrial Patients and Parents

noreply@blogger.com (Dirty Butter) — Fri, 13 Jan 2012 21:32:00 +0000

I've been reading everything I can get my hands on about Mitochondrial Myopathy, and I've added several links to resources in the right sidebar.

But the best lay explanation of what's going on in Mitochondrial Diseases is a pdf from Cleveland Clinic called Mitoland.

I have the kind of Mitochondrial Disease that is caused by defects in the mtDNA, so it is 100% inherited from my mother. ALL mtDNA is inherited only from the mother. I'm an only child, but Mama would have inherited it from her mother, my grandmother. My mother was diagnosed with Parkinson's at one point and was diagnosed with Alzheimer's in later years. One of her brothers died of ALS, and her other brother died fairly young of a heart attack. Her mother, my great grandmother, died of cancer. I can't help but wonder if all these family members on my mother's side actually were exhibiting various manifestations of Mitochondrial Disease, as MITO is associated with all these diseases.

I'm sad to say that means I've passed some number of those defective mtDNA to our daughter, who has passed some number of them on to her three children. As I understand it, there's no way to know how much of the defective mtDNA has been passed along from one generation to the next, as that depends on the mtDNA makeup of the particular egg cell that was fertilized at the moment of conception.

I Have Mitochondrial Myopathy

noreply@blogger.com (Dirty Butter) — Thu, 12 Jan 2012 10:57:00 +0000

I finally got the results of the muscle biopsy I had back on Dec. 8th! And the Neuromuscular Specialist from UAB told us that I had a significant number of ragged red fibers in my muscle tissue, with a diagnosis of Mitochondrial Myopathy. He had suspected that, based on the level of muscle weakness I have plus my complete medical history and family history.

Mitochondrial Myopathy is classified as a Rare Disease by the National Institute of Health, affecting about 1 in 5,000 people. The Mitochondria are found in all human cells except for mature red blood cells, and they are the engines that provide energy to the cells to function properly. When they are defective in some way the cells cannot properly use the food fuel to provide that energy needed for normal cell activity. Exactly how this disease affects a person depends on which type of cells are most significantly affected by mutated Mitochondrial DNA. I was born with this disease, and the doctor says the mutations have been building up in my body my whole life until now I have a significant number of muscular tissue cells with defective Mitochondria. My symptoms have finally progressed to a point that it was possible to make an accurate diagnosis, confirmed by the muscle biopsy.

Adult onset MITO is not a life threatening disease, and for that we are extremely thankful. It certainly does affect my quality of life, however. The specialist does not think I will ever end up in a wheelchair, which is wonderful news. There is no cure and no real treatment, however. That's the bad news.

There are some vitamins and cofactors I can try taking, but I'll basically have to experiment on myself to see which ones, if any, will possibly give me more energy. He suggested I try Coenzyme-Q10, so I started taking it last night. Antioxidants may also be helpful. I had stopped taking all but the most essential meds and supplements early in 2011 when my liver enzymes were first elevated and the weakness became pronounced. Now that we know what I have I plan to start taking Turmeric, Vitamin E, Omega 3, and Lutein, again, as well as the CoQ10. I already eat a diet rich in green leafy vegetables, nuts, and fruits, as well as consciously eating high quality proteins and limited complex carbohydrates - all recommended for Diabetics and people with neurological disorders.

When I see my own Neurologist next time I'll probably ask for a prescription for Physical Therapy again, so they can help me build up a safe exercise routine based on this diagnosis. In the mean time I'll try to increase my activity level VERY gradually.

I've joined the United Mitochondrial Disease Foundation, MitoAction, and the Muscular Dystrophy Association, and I'm studying all the information on this disease they provide.

So I feel like I'm developing a plan of action and have hope that I will be able to slow the progression of this disease with supplements and good nutrition. I'm thankful to God for our close proximity to such a world renowned research hospital as UAB and for the specialists there. Waiting so long to get these test results has been extremely hard on both of us, but now we have an enemy with a name and can deal with it emotionally and physically.

My Open Muscle Biopsy Experience

noreply@blogger.com (Dirty Butter) — Sat, 17 Dec 2011 17:03:00 +0000

I had my muscle biopsy last Thursday after what seemed like an eternity of waiting for the appointment to finally come. It turned out to be in my deltoid muscle, not my leg, which suited me just fine, considering how difficult walking is for me already. They numbed me up with Novacaine so I couldn't feel anything, and since it was right near my shoulder I really couldn't see what the doctor was doing, either.

The doctor, whom I had found so difficult to understand when we saw him back in October, did the biopsy, and he and I chatted quite a bit during the hour plus procedure. I'm glad he was the one who did it, because it gave me a chance to develop some rapport with him and get used to his speech. I feel MUCH better about having him as my doctor at UAB now.

I told him about how much pain my neck had been giving me since the 3 hours of lying flat during all the tests in November, and he gave me a prescription for a muscle relaxer that has helped a lot. As weak as my muscles are it never occurred to me to ask for such a prescription, but I'm glad he offered it! I'm still using the cervical collar while in the car and when I'll be out of the house for extended periods of time, but my neck and back are definitely less painful at home.

I was pleased that he had been impressed with my complete medical history printout I gave him back in October.

We have had extensive experience as care givers for our parents, and we learned quickly that doctor's appointments were much more productive if I brought complete and easy to read information to each appointment.

So as soon as I was diagnosed with Parkinson's back in 2006, I started keeping a journal and also created a Word document in table form detailing all my medical history from birth to the present. Thank goodness I had copies of our life insurance application forms, or I would never have been able to resurrect all the dates of my surgeries and life events. It's very easy to update the document with any new test results, prescriptions, drug reactions, etc. So I print out a new copy each time I go to a doctor and always give them the front sheet with the most pertinent information on it. If they need a full current copy I have that for them, too.

I had done a good bit of online research about how the biopsy would be done, but somehow I didn't realize just how big a sample they would be taking out. I had an open biopsy, rather than a needle biopsy. He took a piece of muscle tissue from my upper arm about the size of the last knuckle of my little finger. I was able to keep my knees bent the whole time, so I didn't end up with as much back pain as I did last time.

Since I'm diabetic I have to wait 10 days to have the stitches removed. I was sent home with antibiotics to take, as well as pain meds. And I really was in a great deal of pain, which surprised me, too. I guess if I had realized what a big hunk of me he was going to take out I would have realized I was going to be very uncomfortable. I've been off prescription pain meds for several days now, but still use Tylenol sometimes.

I was also surprised by how little I was able to use my arm - almost nothing at first, but still difficult even now after 8 days. I've pretty much lived in sweat pants now since the biopsy, even wearing them when we go out Christmas shopping. I had no choice. The first trip out after the biopsy to get a sandwich and do a small amount of shopping I didn't stop to think and wore my elastic waist jeans, as I normally do. That was stupid, because hubby had to help me get INTO them.

Well, I had to use the restroom while we were out - and I couldn't pull my pants down one handed! I've done my share of going into the bathroom with my father-in-law, who had Alzheimer's, but this was the first time someone ever had to go in a public bathroom to help ME. Hubby helped me of course, but he understandably wasn't comfortable being in the women's restroom, even though we made sure it was empty. It really makes you appreciate businesses that provide Family Restrooms for situations such as this.

I was told not to lift anything heavier than a plate of food. I've learned to do a lot of things left handed and am gradually using my right arm more and more. Hopefully when the stitches are out and the heavy bandage is gone I will be able to quickly get full range of motion back.

As for test results - it will take 3 weeks to get that back, so we'll just enjoy Christmas and possibly New Years before we hear the results.

This is an expensive invasive test that is not performed if there is any other way to obtain a diagnosis, but I'm glad I decided to have it done. I've said it many times while my diagnoses kept changing that I can deal with the Devil I know much better than I can the Unknown.

If you've read this far it may be because you are considering having a muscle biopsy. I pray that you get definitive results that will help your medical team provide a beneficial treatment regimen for you. And we pray for that for me as well, that the Neuromuscular Specialist will be able to determine what type of Myopathy I have. We are praying that it will be one of the types for which a treatment has been developed.

May you have a Blessed Christmas!

Visible vs Invisible Disabilities

noreply@blogger.com (Dirty Butter) — Tue, 06 Dec 2011 12:51:00 +0000

It's absolutely amazing how wonderfully helpful and concerned total strangers have been since I started wearing the neck brace out in public! Not only are they helpful, but they also strike up a conversation with me, usually asking if I was in an automobile accident. We ate lunch out yesterday, and a waiter who wasn't even taking care of us stopped by to ask what was wrong with my neck! I can't imagine that people would be so interested if I had an arm in a sling. So I think at least part of their questioning is that people "enjoy" hearing stories about wrecks! LOL!

But I digress. This sudden "visibility" (that I have avoided for so long out of self consciousness) affirms that most people have a kind heart toward those with disabilities, but they are usually too preoccupied with themselves to notice those who are struggling with everyday activities. I must work at being more conscious of others when I am in public.

I think of all the people dealing with the various Movement Disorders who don't use a cane or walker, but who find even walking around to be difficult. I'm sure most don't want to be seen as disabled, but I'm sure they would all appreciate the little kindnesses, like holding a door open for them. But without that "hit them over the head with it" obvious indication of limited abilities - people just don't notice they could use a little extra TLC.

I know that has been true for me for a long time. I've been uncomfortable with the idea of being seen as handicapped, although I've been grateful to have and use a Handicap Sticker for the car. But I've also been saddened that friends didn't notice that I'm struggling. Then I start fussing at myself that I'm having a pity party and to get over it. I can't have it both ways, I tell myself. I don't want to be one of these people who is constantly listing all their current ailments, aches, and pains, so it's my lack of voicing how I'm doing that prevents people from realizing I'm having troubles.

The neck brace has very quickly changed all that. It's a shame it took using it to cause people to notice the problems I have had for a long time with simple activities like walking.

Trying to Get Comfortable

noreply@blogger.com (Dirty Butter) — Wed, 30 Nov 2011 16:57:00 +0000

I'm still having a lot of trouble with my weak neck muscles. I've read that the human head weighs 10 pounds, and I believe it! So we bought a new soft neck wrap-around brace that's fairly comfortable, because there is an adjustment under the chin to make it smaller there. That keeps me from feeling like I'm choking, at least. My Neuro cautioned me not to use it too much, though, because it would just make my neck muscles that much weaker if I did.

So I'm mostly using it in the car and at church. I need it at church, because I don't get any support from the chair in Sunday School. We're meeting in our Fellowship Hall for the next few months while our sanctuary is being renovated, so they were kind enough to move a high back upholstered chair from the vestibule downstairs for me. That did help this last Sunday, but I'm still awfully sore by the afternoon. Sitting up to eat wears me out by the end of the meal.

At home I have a Tempurpedic type U shaped cushion I use on the sofa that gives me some support without doing all the work for me, and it helps a lot. We still try to get out of the house a couple of days during the week so I can walk for a while. I'm extremely slow, usually holding onto a shopping cart for help, but at least I'm getting some exercise that way.

My muscle biopsy is supposed to be Dec. 8, but I still haven't received the official paperwork about it in the mail. So I'm just in a waiting game for now.

I continue to run Google searches occasionally, trying to find out more about the various types of Myopathy. I was very interested to find out there IS something called Steroid Myopathy! I've been telling every doctor I've seen that all this weakness started when I was pumped full of steroids after I developed Angioedema from a drug reaction. Who knows... I may turn out to be right!

I've also found that there are all kinds of Movement Disorder problems caused or aggravated by Statin drugs. Since Lipitor became more easily available today, and Statins are cholesterol lowering drugs, this is worrisome to me. I stopped taking my cholesterol meds when my liver enzymes went crazy, but there are an awful lot of people who take these drugs. We hear all these side effect warnings so much that I think most people's brains just glaze over and ignore the warnings.

We had a wonderful Thanksgiving, and I do have a lot to be thankful for. Even though they drive me crazy with their slowness, I'm extremely thankful that we live close to a world renowned teaching hospital at UAB, so I can see their Super Specialists when I need them. And I'm very thankful I have a good Neurologist and a General Practitioner who take the time to listen to me and seem genuinely concerned about helping me get better.

I'm thankful for a supportive family who put up with me, as I know I'm not very easy to live with. It seems like everything frustrates me nowadays. So I'm irritable and easily upset. My poor hubby earns another star in his crown every day!

Test Results??

noreply@blogger.com (Dirty Butter) — Sat, 12 Nov 2011 16:05:00 +0000

The Neuromuscular Specialist called the other day - 2 days after I had called his office and left a message asking for an update on the test results. He was rattling off a lot of medical terms I wasn't familiar with, and his thick accent didn't help in understanding what he was telling us. But from what I could understand he thinks I have Mitochondrial Myopathy, which is a genetic disorder involving DNA mutations. I questioned him about that, as it would seem logical to a lay person that if it were genetic I would have had symptoms my whole life. He said symptoms often didn't show up until a person's 50's or 60's, and my first movement disorder symptoms did show up in my late 50's. And I was what people used to call a sickly child.

From what I've read it's actually called Adult Onset Mitochondrial Myopathy. I did find a very good information source online at the UMDF, United Mitochondrial Disease Foundation . Once I joined with a free membership I was able to read quite a few helpful articles.

There's a long list of possible symptoms associated with MITO, as it's abbreviated, depending on which organs are affected by the gene mutations. But I do recognize myself in the list. Even the Type II Diabetes is on the list, as well as the Myoclonus.

He is scheduling me for a muscle biopsy for a more conclusive diagnosis, although even then it won't be definitive. But I'll feel better knowing we'd tried everything we can to pin down the diagnosis and what type of MITO I might have. I handle the Devil I Know much better than an unknown enemy. There's just something about being able to read about the disease that helps me deal with it - even if there is no real treatment for it.

There are some articles I've read that suggested there are some vitamins and supplements that may help to delay the progression of the mutations, but these articles caution not to take them without medical supervision, as some can actually make variations of MITO worse, rather than delay progression.

So it's still a waiting game, as I continue to be very weak and find walking to be difficult and slow and holding up my head very tiring and painful.

Still NO Test Results!

noreply@blogger.com (Dirty Butter) — Mon, 07 Nov 2011 23:59:00 +0000

Our patience has grown very thin, but there's not much we can do about it. I went through 3 hours of neurological tests week before last, and we still haven't heard back from the doctor. I was already having misgivings that the doctor and I had a language barrier. So this isn't making me any more comfortable with him.

Plus, I don't lie flat well at all. I sleep in a recliner and have for years, so that 3 hour stint flat on the exam table, under so much stress and tension, has my neck dealing me fits. I've been using my TENS machine and the hot pad, plus I keep a soft neck support around my neck while I am sitting. I've taken more pain meds in the last week than I have in a very long time. That is very ironic, since the UAB doctor kept asking me where I was hurting...and I kept telling him I wasn't. HUH! Now I AM!!

I do have an appointment with my own Neuro next week. Unless we hear something soon, he's going to get an earful from us about the UAB doctor!

As for my current situation - it's very difficult for me to walk - very slow and labored, and sitting without a neck support gets very painful. I end up propping my chin up with my arm...fist under my chin.

3 Hours of Tests Today

noreply@blogger.com (Dirty Butter) — Thu, 27 Oct 2011 18:43:00 +0000

The Bradykinesia (slow walking) continues, so today I went to UAB in Birmingham and had a Nerve Conduction Velocity Test, a complete Jolly's Test, and an EMG (Electromyogram). It took 3 hours to complete all the testing, and that involved some fairly uncomfortable electrical stimulation in the Nerve Conduction Test and some very uncomfortable electrical shocks during the Jolly Test. The EMG is mildly uncomfortable, but they did that last, and by then I was so stressed and tired that it was not pleasant, either.

I've had variations of these tests before, so at least I knew about what to expect. I'm glad I didn't realize ahead of time that I was having the Jolly Test, as it was extremely painful last time. It still wasn't easy, but it wasn't as bad as it was the first time I had it done. This test was more complete than the other Jolly Test I had, testing the eyelid muscles, the neck muscles, as well as the hand and arm muscles. The NCVT was done on my right leg and arm, as was the EMG.

A technician did the NCVT and Jolly Test, but two doctors did the EMG. They said the NCVT and Jolly Test looked normal, but the EMG showed signs of polyphasia. I tried researching that, but couldn't tell much about what that meant, and of course they didn't elaborate. They said it would be up to the Neuromuscular Specialist to decide if I needed a muscle biopsy, based on the results of these tests.

So, we still don't know anything, but maybe in a couple of weeks we'll get some indication of what the specialist thinks might be going on. We sure hope so.

The Long Awaited Appointment

noreply@blogger.com (Dirty Butter) — Sun, 09 Oct 2011 11:36:00 +0000

We've waited several months to see the Neuromuscular Specialist at UAB, and I finally saw him Friday. We had spent the better part of a week going from doctor to doctor collecting every medical record we could to either FAX to them or bring with us. I had updated all my own medical history information that I keep on my computer and took that with me, too. All the paperwork made a stack over an inch high.

The doctor was very pleasant, but his English was difficult to understand, and at times I think he was having difficulty understanding me. He asked a lot of questions, did a very brief test of muscle strength, walking, and balance abilities. He gave me a prescription for Lyrica, which he said would help with the muscle weakness and fatigue. And he ordered an EMG. That's the test where they put needles in your legs and measure the electrical signal between the needles to see if the muscles are working properly. I've had that test done twice - one was abnormal and one was normal - but that was some years ago. He also mentioned I might need a muscle biopsy.

And that was it.

We left feeling like nothing had been accomplished. I have to wait on them to mail me the appointment time for the EMG, so I don't know how long it will be before that's done. And the doctor's office won't decide when to see me again until the EMG has been analyzed, so that's up in the air, too.

And now I'm taking the Lyrica, which is leaving me so looped that you would think I was drunk! I'll give it a few more days to see if these initial side effects wear off, but there's no way I can take it if this continues. It's an anti-seizure medicine, just as my Primidone was, but I'm not having the Myoclonic jerks any more. I told the doctor that several times, but each time he would say that it would help with the weakness and fatigue.

I wish I could say I had confidence in him at this time, but I don't right now. Very frustrating, as I'm sure he's a top notch doctor - he wouldn't be at UAB if he weren't. It's the language situation that makes me feel doubtful.

So I continue to walk slowly and awkwardly, and now I'm drunk to boot! LOL!! And disappointed, although I knew they would want to do more tests - they always do. It's just been a long year of doctor visits and tests and more tests, and we're no closer to finding out what's going on with me than we were back in April.

I Know Lots of Ailments I DON'T Have!

noreply@blogger.com (Dirty Butter) — Sat, 24 Sep 2011 13:33:00 +0000

Since all this weakness started in March I've been tested for just about everything you can think of. I've been tested for Myasthenia Gravis, Hemochromatosis; Lyme Disease; Thyroid problems, including an Ultrasound of my thyroid; had a Liver Ultrasound and a Biopsy; and had an Echo-cardiogram, an ABI to test for circulation in my legs, and a Nuclear Stress Test. All these tests came back with a clean bill of health.

We are very thankful that so many of the really scary possibilities have been eliminated.

But I'm not through with the testing yet, as my liver enzymes continue to be high, and the Creatine Kinase test I've had twice now shows elevated MB enzymes. That's why I had a complete cardiac workup. I have read online that neuromuscular disorders can cause high MB results, not just damaged heart muscle, but my Cardiologist wanted to rule out any heart involvement.

I told the Cardiologist I really didn't think it was my heart, but I'll admit that hubby and I were both very relieved when the results came back OK yesterday.

So now I wait for my October appointment with the Neuromuscular super specialist at UAB. We're busy collecting all the test results and CD's from the various tests I've had over the last few months.And I've been keeping a diary, too. These specialists are very difficult to get to see, and I want to be sure the appointment is as productive as possible.

I still don't walk very well, and I tire out very easily, but the Essential Myoclonus continues to be basically nonexistent. So we're praying that the UAB specialist will be able to pinpoint the problem and help us deal with it.

Still Being Poked, but Optimistic

noreply@blogger.com (Dirty Butter) — Wed, 07 Sep 2011 10:55:00 +0000

Well, I was hoping to wait until I had something definite to add, but it looks like that's not going to happen any time soon. Since I've written last I've had two more sets of liver enzyme tests with varying results, but still high. I've been to the Endocrinologist, and he's run all the thyroid tests again and done an ultrasound of my thyroid. He is satisfied that all is normal there. The liver biopsy results came back normal. So far so good.

But, I asked at my last Gastro visit if muscle atrophy could cause the liver enzyme numbers to be high, based on some information I found on the internet. So he added a Creatine Kinase test to the orders for the liver function panel, and the CK numbers were elevated. I'm not sure yet what that means, as I'm having a routine colonoscopy this week and won't see my Gastro again until the followup appointment for that.

I've decided that the variation in AST and ALT numbers I keep getting is determined by how much walking I've done prior to the test. When I had to walk a long way to the lab the numbers have been higher than when it was close by. I really do think all the abnormal numbers have something to do with whatever is making my walking so labored and oddly gaited.

I have a feeling I won't get any answers until I see the Neuromuscular Movement Disorder Specialist at UAB in October. But at least we've ruled out several things that could have caused this weakness.

I've finally reached a point that I'm no longer worried about them finding some horrible something wrong with me, and I'm very thankful for that. I am not as weak as I was back in March when this all started, and I'm VERY thankful for that. I feel good enough to have made a dent in the backlog of work that accumulated when I was so very weak, and that helps my outlook, too.

I'm thankful to God that most of the scariest possibilities have been ruled out, and I'm no longer anxious about the final results of all this testing.

Liver Test Results Still Abnormal = Liver Biopsy

noreply@blogger.com (Dirty Butter) — Thu, 21 Jul 2011 20:03:00 +0000

My liver enzymes tests came back abnormal again, higher than they have been, so I had a liver biopsy this morning. It will take about a week to get the results.

We had read online about what the procedure would be like, but what they actually did was a good bit different. And I'm still hurting, although not as bad as I was right afterwards. I'm still not able to take a full breath without a sharp pain at the entry point. If feels like I'm getting stabbed every time I inhale with any breath that's not shallow. Morphine and Lortab barely cut it at the hospital, and they've long since worn off. I don't want to take Tylenol, as I think it would be a waste of time. If I'm still hurting this much tomorrow, I'll call my Gastro and ask for a prescription.

I'm guessing that my diaphragm is having myoclonic jerks from the irritation to the nerves in the diaphragm. And of course I'm not taking any Myoclonus meds now.

We're praying that the results of this procedure will give a definitive answer as to whether or not I have any kind of liver damage. Reading all the side effects that the various meds I've been on and off for the last six years, it wouldn't be too surprising if I had Drug Induced Liver Disease. Or it could be Fatty Liver Disease, as I used to weigh 182 pounds. I'm a small boned 5 foot 2 inch lady, so I was way overweight up until about a year ago.

My Neuro is waiting for all these liver tests to be dealt with before he will proceed with referring me back to the Movement Disorder Specialist at UAB. He's the Head of Neurology there at one of the best diagnostic hospitals in the USA. He's the one who gave the dx of Essential Myoclonus. But now I'm not jerking and almost too weak to walk.

I also have an Endocrinologist appointment next month. So I'll see him, if the liver biopsies come back as normal, to check for thyroid problems.

Dr. House, Where ARE you???????

Please keep us and my doctors in your prayers. We need an answer.

Another Possibility Crossed Off the List

noreply@blogger.com (Dirty Butter) — Thu, 14 Jul 2011 09:51:00 +0000

Well, the DNA test for Hemochromatosis came back normal, so that's another possible diagnosis for my weakness ruled out. But after doing the research on this particular line of testing, I would caution anyone with Anglo Saxon ancestry to consider this as a possible cause of a wide range of disorders, from Type II Diabetes to heart problems.

It's the most common genetic mutation found so far, with as many as 1 in 8 of Irish descent being a carrier of the gene. Something in the range of 1 in 300 Northern Europeans have at least one of these mutated genes, but it takes the mutation from both parents for the likelihood of symptoms to be dramatic. And if caught before organ damage is done, it can be easily treated. It normally takes many years to build up the iron overload, so most people don't show symptoms until they are older.

With the Hemochromatosis test being normal, my Gastro doesn't want to see me again for 6 months. So I guess that means he's ruled out any liver problems as being the cause of my problems.

So, I've requested a Western Blot Lyme Disease blood test. I know this is a very, very long shot, but I have had the bull's eye rash from a tick bite in the past. We found it one evening and were waiting at the doctor's office's doorstep the next morning. He put me on a round of antibiotics at that time. So the chances of having Lyme are not high, at least from that event. BUT, I have always lived in Alabama, and ticks are everywhere. I can't count how many times I can remember finding them on me over the years, and their bite doesn't always make the bull's eye rash.

Lyme Disease can mimic lots of other diseases, depending on which organs the bacteria attacks, including neurological disorders. Treating it involves long term antibiotics, which may or may not reverse the damage already done to the body. So, I'm hoping this test turns out to be negative.

I did get a referral from my GP to an Endocrinologist, and I have an appointment with him in mid August. I'm still holding out hope that this terrible weakness turns out to be from Hypothyroidism, which our daughter has been treated for for many years. My symptoms do fit, even though the routine tests came back normal. But it is possible to have a hypothyroid condition with normal tests. It would explain my muscle weakness, hoarseness, and intense itching, and it's fairly easy to treat.

I see my Neuro again next week, so we'll see what he says then.

In the meantime I continue to use the cane outside the house, and could really use the walker. But I'm back to that same head space I was years ago when I was originally dx with Parkinson's. There's just something about "giving in" to the walker that I try to put off as long as possible. It's bad enough having to use the cane, without having people see me as getting worse. It draws too much attention to me, and I can't stand that.

So for now, I'm praying this turns out to be something simple to treat, like thyroid problems, and not some exotic disease that may never be diagnosed.

I'm trying to be patient, but frankly I'm not doing a very good job of it. I deal with an enemy I know much better than I do the unknown. But I'm in God's Hands, and He knows my needs far better than I ever could.

Still Being Tested

noreply@blogger.com (Dirty Butter) — Wed, 06 Jul 2011 16:51:00 +0000

Since April I have had too many blood tests to count. Some have come back normal, and others have not. The liver function test that was abnormal right after the angioedema from the drug reaction came back normal the next time it was done, and now it's abnormal again. That has prompted my Gastroenterologist to do a bunch of additional blood tests. And some of those results led to even more blood tests. I'm a human pin cushion right now. LOL!

I'm using the cane all the time out of the house now and basically furniture walking in the house. And I'm not jerking, even though I have cut my Primidone down to just one tablet morning and night. I see a small bit of jerking very occasionally, but nothing like it used to be.

Until my doctors figure out what's going on, I've stopped taking all my other meds, vitamins, and supplements, except the Miralax. So far my blood pressure has remained in the normal range, and considering how stressful this whole business has been... that's wonderful.

And I'm considering stopping even the Miralax. I'll have to be careful with that, though, or the old constipation problem may return. I'm still eating prunes and nuts for a snack most afternoons, and we eat raw spinach frequently. So I'm still getting a good bit of iron in my diet, but not any supplemental iron. I've even stopped eating bran cereal for breakfast.

After doing a lot of research online on the various tests they are running, I'm beginning to think my problems are caused by an iron overload in my system. If all that's happening with me does turn out to be caused by iron overload, I don't want to make it any worse if I can help it. The good thing about it is that there are simple ways to treat that problem if caught soon enough, so we're keeping our fingers crossed.

Limbo Land is No Fun!

noreply@blogger.com (Dirty Butter) — Fri, 24 Jun 2011 15:11:00 +0000

Well, the blood test came back normal, as did the Jolly test. I'm still having all the same weakness, gait problems, and hoarseness, though. From what I've been able to research on Google, neither of these tests is totally reliable, so I'm not ready to breathe a sigh of relief just yet.

I have asked that my Neuro refer me to a particular Endocrinologist, though, so maybe I can get an appointment with him next week. Well, I mean get the authority to make an appointment next week. No telling how long I'll have to wait to actually SEE him.

Hubby and I are hoping I turn out to be Hypothyroid, as all my symptoms fit that disorder, and our daughter takes medication for it. All my thyroid tests were normal, but that doesn't mean I don't have a thyroid disorder. THAT would be easy to fix with medication, so we're hoping that's it.

I've all but quit jerking, too, even though I cut the Primidone from 3 at a time to 2 at a time, so I lowered it to one tablet morning and night yesterday, and I'm still not jerking. Very weird.

It sure would be nice and neat if medical tests were 100% accurate in every case, but this is real life. There are always exceptions.

More Tests - Still Waiting

noreply@blogger.com (Dirty Butter) — Sat, 18 Jun 2011 15:00:00 +0000

I went back to my Neurologist this week, since I'm still having lots of weakness, odd gait, balance issues, and other symptoms, such as my voice getting very hoarse the more I talk and the later in the day it gets. He had a Jolly's Test done, which measures how much the muscles in one hand fatigue as they are repeatedly stimulated with an electrical shock.

This was not a fun test at all, but I got through it. Trying to joke a bit, I said something to the technician about this must be what a Taser feels like - and she said the test shock was stronger than a Taser! No wonder it hurt so badly! But, the good news is, my Neuro said he would call that day if the test came back abnormal...and he did not call!

I did have more blood tests done, however, and the results won't be back until next week. I'm to call and see how those turned out, and then I guess I see him again, probably for more tests. I'm SO ready to feel better!!

In the meantime, since I am not jerking the way I was for the last year or so, he's cut back my Primidone dose, and I've stopped my Triavil, Simvastatin, and Magnesium supplements. I don't like stopping more than one medicine at a time, because you can't tell which one was the culprit, but I'm getting desperate now. So I'm not doing this the proper way. I stopped them all at once. So far no additional jerks on the lower Primidone dose, but it's only been two days. I can't tell any difference yet, but I can hope that cutting down on my meds will do the trick.

We covet your prayers that God will guide my Neurologist in the right direction.