Tag Archives: Neurologist

Doctors, Doctors, and More Doctors

Day by Day with a Movement Disorder Posted on by 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.

Hemochromatosis – Another Possibility Crossed Off the List

Day by Day with a Movement Disorder Posted on by 4

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.

More Tests – Still Waiting

Day by Day with a Movement Disorder Posted on by 4

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.

Seeing Neuro This Week

Day by Day with a Movement Disorder Posted on by 2

I am still very weak, with little energy for standing or walking. I’ve tried to gradually increase my exercise level, hoping to build up some strength, but so far it’s not making any difference. I have been off the Lamotrigine for almost 2 weeks now, so it’s a matter of wait and see what the Neuro thinks when I go back to see him this week. At least I’m not jerking a lot. I’m very thankful for that.

As part of my physical therapy and our weekly outing we call our Date Day, we decided to go to a huge yard sale with hundreds of booths. Knowing my stamina level, I used the walker with the seat, which was definitely needed. It took us about an hour to walk through the whole thing, with a few stops to look at interesting items. But we didn’t find anything we wanted to buy. The seat came in handy, as I knew it would, but I was also glad to have the big swivel wheels. They made the walk easier than the simple kind of wheeled walkers do.

So, I continue to spend most of my time working on efforts to help tornado survivors thru our free Plush Memories Lost Toy Search Service and also a Facebook site called Wedding Dresses for Tornado Victims.

We aren’t physically able to get out and help with the debris removal and other urgent needs of the survivors of the April 27th tornadoes in Alabama, but I can help through the computer.

We have well over 150 Fabulous Finders eagerly awaiting their chance to unite replacement stuffed animals, dolls, and blankies with the children who lost them during the storms. And the Facebook page now has over 50 Wedding Dresses, Bridesmaid’s Dresses, and other wedding related apparel donated, as well as donations of wedding related services, such as invitations, alterations, and flowers.

I’m now trying to find ways to reach out to the pastors of churches that were damaged or destroyed during the tornadoes, hoping to find the brides who will need help with their weddings. And I’ve reached out to several Toy related sites on Facebook, so they know that we can help individual families replace the most precious of lost toys.

So I stay busy, doing what I can, and pray that my Neurologist will be able to find some way to help me get my strength back.

Disk & Muscle Spasms Rear Their Ugly Head

Day by Day with a Movement Disorder Posted on by 2

For the first time in quite a few years, I’ve been having real problems with my neck and back for the last couple of weeks. It seems to get worse as the day progresses, so by the afternoon and particularly at night I’m really not comfortable at all.

I’ve tried Tylenol and Aleve, but I can’t even tell I’m taking them. I’ve also been having constipation problems again, so I’ve been reluctant to ask one of my doctors for a powerful pain med, knowing strong pain meds would just make the constipation worse.

I’ve been thinking the pain spasms would clear up on their own if I gave it some time. I’ve tried to keep moving my neck and shoulders as much as I can, used the hot pad, and have been using the inflatable neck brace for a short time each morning. It’s way too uncomfortable to use it for very long, but it’s extremely adjustable, and I have all the Velcro sections pretty well suited to my short neck. After I put it on I pump up the bladder in it and it gives a little traction. That helps for awhile, but it’s way too painful to use it after the spasms take over later on in the day.

The human adult head weighs about 10 pounds, and the neck and shoulder muscles have to be strong enough to carry that weight around in all kinds of positions all day long. Just imagine how long your arm would last without fatigue and pain if you were to lift a 10 pound bag of potatoes for 12 straight hours! Normally, our bodies are so wonderfully made that we don’t give it a second thought.

But I have Degenerative Disk Disease and Osteopenia, which means my disks and bones are not as healthy as they should be. I’ve had bulging disks in my neck and lower back for many, many years. So I guess I was overdue for a round of pain with one or the other. This time it’s the Cervical disk that seems to be the focus.

I’m not sure, but the Myoclonus may be making the spasms worse. I was in quite a quandary as to which doctor I should go see, my Neurologist or my Orthopedist. The trigger points seem to be on the right side, not near my left shoulder that does all the jerking, so I’ve decided the Orthopedist makes more sense.

So, it looks like I will be making an appointment with my Orthopedist next week.

4 Days of Full Lamotrigine Dose

Day by Day with a Movement Disorder Posted on by 4

I’ve been on the Lamotrigine morning and afternoon 25mg dose for 4 days now, and only the first morning caused me any problems. I went back to sleep after breakfast on that first morning I took a morning dose, and I slept almost 3 hours. That is an extremely unusual thing for me to do. But I haven’t been sleepy since then. It may be helping a little bit, but nothing spectacular. I’m still jerking pretty badly if I’m under even the least amount of stress, which seems to be a lot of late.

One of my triggers seems to be getting in any kind of a crowd, so Church is always very stressful for me. I’m very self conscious about the jerking, and I feel bad for the people who sit behind me, as it must be very distracting.

But I’m not zonked on it, as I was when the Neurontin dose was increased. That’s a good thing. And I know I’m on the smallest dose size the Lamotrigine comes in, so there may be some room for adjustment to lessen the jerks a little bit more. I’m hoping that’s the way it will work out, without putting me in a daze the way the Neurontin did.

I don’t think I’ve ever really explained what the Primidone and Lamotrigine prescriptions are for. They are actually used as anti-seizure meds, and the Lamotrigine can be used with Bipolar Disorders and Depression disorders. The Clonazepam the MDS tried me on first, as well as the Neurontin, were also meds used for seizures and depressive disorders. (Which I thought made it odd that they depressed me!) So it’s kind of like taking a pig in the poke for medicine.

Their use for Essential Myoclonus is considered an off-label use, and from everything I’ve been able to read, the medical profession really doesn’t understand how these meds work in the brain. Evidently when they work properly they calm down whatever erratic electrical signal there is that’s coming from my brain that sets off these muscle spasms.

This is where having a Neurologist I trust is so very important, and a pharmacist who watches over every medicine I take, prescription as well as over the counter. I wouldn’t think of buying some of my prescriptions at one pharmacy and others somewhere else. It’s just too dangerous for me.

So I’m trying hard to be hopeful that my Neuro will find a good balance on my medicines and get me back to where I’m not jerking so much. And I’m fighting the blues, although I certainly haven’t won that battle yet.

Neuro Visit Uneventful

Day by Day with a Movement Disorder Posted on by 3

Well, I saw my Neurologist yesterday, and it went pretty quickly. He was very interested in the Diabetes diagnosis, and asked a few questions about that, and wanted to know if the Physical Therapy was helping – I said it was – and that’s about it. I did ask him about my hands going to sleep, and he did some checking for Carpal Tunnel Syndrome, but nothing he did made my hands tingle. I didn’t really think it was CTS. He thought it might have something to do with the Diabetes, and wants to explore it further in 6 months if I’m still having trouble with them then. Sounds reasonable to me, as I hope to have lost enough weight in 6 months to be out of the diabetic situation.

One thing doctor’s appointments do is get me out of the house with an excuse for eating out, and I pigged out at the best Chinese restaurant buffet in town. We don’t go there too often for just that reason … we BOTH pig out. I was pleased that my blood glucose was reasonable afterwards, particularly since I had indulged in a small piece of red velvet cake for dessert. It’s so odd how I can eat at home what seems to be a 100% diabetic conscious meal and end up with high numbers 2 hours later, but have a small dessert when we eat out and not have high numbers. Weird.

I’ve dropped another pound this week, which I’m really glad of, and I’m getting to wear some clothes that I had almost given away, as I didn’t think I would get back down to that size ever again. Now THAT’s a good feeling!!!

So, without any whining, I’m going to quit this post while I’m ahead!!!

Seeing My Neurologist This Week

Day by Day with a Movement Disorder Posted on by 4

It’s time for another visit to my Neurologist this week, and I’m looking forward to seeing what he says about the Diabetes diagnosis and my Physical Therapy exercises. I’m still having some difficulty keeping my blood glucose numbers where they should be, and that keeps me somewhat down in the dumps. I feel like hubby and I are doing everything possible to put the right foods in me, so I just don’t understand why I can’t keep my levels in range all the time. It is just another complex disease to have to deal with.

I’ve been working really hard to get our new Collectibles Catalog online for the last few weeks, and the clutter I’ve made with all my stacks of plates and such is getting to me. It seems like we’re living in a warehouse these days, with boxes stacked everywhere, full of plush animals and vintage items, too. It’s a fun business, and we enjoy going out on the buying jaunts, but then I come home and have to try to find a place to store our “finds”. It seems I can’t have my cake and eat it, too … a clean house and keep on buying new lovies and collectible finds.

I’m still practicing with YouTube videos of Sacred Harp music, and it’s a slow go to learn how to do it. My brain power is definitely not what it used to be, but that could be old age creeping up on me, too. All I know is that I don’t learn new things anywhere near as easily as I once did, and it’s aggravating and frustrating! I read the other day about a 90 something year old lady finishing college, and I thought to myself how impossible it would be for me to absorb all that information now.

I am being very successful with my weight loss attempts. I’m down another couple of pounds, losing at the rate of 1 pound about every 10 days. I’m hoping that by going this slowly and steadily with it that I will not end up with the baggy skin they always show on TV.

Speaking of TV, we’ve been without any TV reception now for several weeks, thanks to an electrical storm that killed our amplifier and antenna rotator. We’ve discovered some of our favorite shows on hulu.com, and I have my notebook hooked up to the TV, so we can both watch the same thing at the same time. We have a large collection of movies, too, so we’ve managed to “watch the tube” several hours a night. I’ve ordered a new amplifier, and do plan to replace the ruined parts and get our television shows back. I do feel good about my success in getting the picture on my laptop to show on the TV. So some neurons are still firing up there.

I’ve done a lot of whining today, and for that I’m sorry. I considered erasing the whole post, but I want this blog to be a true look at what it’s like to have my health problems, so you’re stuck with it. My apologies.

Went to my Neurologist yesterday

Day by Day with a Movement Disorder Posted on by  

I saw my Neurologist for my 6 month checkup yesterday and got a few questions answered. I was right that my brain fog is coming from the Primidone, and not from the EM itself. He was also quick to agree with me that the Neurontin had caused the terrible nightmares and grogginess that led me to go back on the Primidone. He said there’s really nothing better that I could take that might not constipate me so badly, and was surprised to see all that I take each day just to keep my digestive system working properly.

I described some specific problems I am having defecating, and he said I am experiencing Dystonia.

We told him how exhausted I get by early evening, and I asked for a prescription for some Physical Therapy, which he quickly gave, so that I could be monitored while I try to increase my exercise level. I may not have a doctor watching me all the time the way they do on the Biggest Loser, but at least I won’t be so scared that I am doing myself harm and will be more likely to push myself a little harder. I have an appointment next week for an evaluation and expect to go several times and then wait several weeks and check in. I’d like to do that all this year if my insurance will allow it.

I did forget to ask him about the dry skin situation I deal with year round, and there’s something else I meant to ask him about, but now I can’t even think of it! LOL!! It will pop into my head when it’s good and ready.

We went out to eat afterward, but it started sleeting just as we got to the restaurant, so we came straight home after we ate.

I’ve gotten behind posting requests for help on the Search Service, since we went to see our younger daughter and her family this weekend. I enjoy seeing them all, and really miss having both our daughters close to us, but trying to sleep anywhere but in a recliner is a real problem for me. It’s taken me the last few days to get my back and neck settled down again. I cut back on my exercises the last few days, since I was waking up with so much back spasm going on. But I did 2 sets of 10 of everything today and used the mini trampoline yesterday and today. Two steps forward and one step back seems to be the norm these days.

So today I have been trying to catch back up with the posts on the Search Service, but it will take awhile to get caught up. I don’t know about other retired people, but I seem to stay busy all day long. I’m not complaining, mind you, as I would be bored out of my skull with nothing to do.

I continue to add to my house cleaning routine, and some parts of the house are actually staying straight most of the time now. Well, notice I said “some”! Certain places seem to be the dumping ground for things I straighten up from other rooms, but don’t know what to do with yet. So some parts are getting consistently cleaner, and others are getting progressively worse. Rome wasn’t built in a day, right?? It took years to make this mess, and it’s going to take time to correct it all.

I’m feeling good about the progress I am making on several fronts, and looking forward to seeing the Physical Therapist next week. Now let me get back to posting!

Had a New EEG Test Yesterday

Day by Day with a Movement Disorder Posted on by 4

I had my second EEG test yesterday, but my reactions to it were considerably different from the one I had two years ago. Back then, my Neurologist was trying to decide if I had Parkinson’s or not. My only symptom at that time was a very labored, slow walk, that he called Bradykinesia. I did not have any problems with the EEG test at all.

Things have changed a good bit since then. Now I have lots of tremors, jerks, and facial tics, that only get worse if I am in a stressful situation, or cannot get my mind “somewhere else”. I have discovered that when I am deeply concentrating on something, such as writing here on the computer, that the movements are quieted down considerably.

But put me in a situation that is the least stressful, or in one where I am just sitting with nothing actively going on, and I turn into the hurky jerky girl. Church is the usual place that happens. The only way to stop it that I have found is to go into a meditative state, finding some minute crack or spot on the wall to give my total attention to. It spaces me out, I don’t hear the sermon, but at least I am not bothering all the people who sit behind us.

And now I know that it happens during EEG tests, too. With nothing to occupy my concentration, following her directions to do fast open mouth breathing for 3 minutes to make me hyperventilate, and some very uncomfortable series of strobe lights that made me feel even more stressed, there just wasn’t any way to stop the jerks. The harder I tried to be still, as she had asked, the more I moved. She finally gave up and said at least it would let the doctors see what my brain was doing while my body was doing its own thing. She did tell me to open my mouth and stop pressing my lips together, so my mouth trembled and pulled to the left the whole time, too.

It took 45 minutes to complete the test, and I was exhausted the rest of the day.

The funny part was my hair!! They do not use the scull cap method, so each of these electrodes was stuck to my scalp with something like KY jelly. And there were lots of electrodes – maybe in the 20’s? When she was through and told me to look in the mirror, I looked like something from a Monty Python movie. I smoothed my hair down as best I could, but would have loved to have walked out just as I was, so hubby could get a kick out of it. If he had been the only one in the waiting room I would have, but it was a very busy place.

We were set to drive some distance to a family funeral after the test, so I had anticipated the hair goo and planned to stop at any franchise hair salon along the way and get my hair washed. So that was easily enough taken care of. I am glad I knew to expect that, as it could have been a real problem if we had been running short on time. I didn’t appreciate having to pay $12 just to get it washed and blown dry with no styling, but there wasn’t anything else to do. I had also brought a complete change of clothes and shoes, so I would not have to take the test in good clothes.

We did get into a situation of some very expensive parking at UAB, though, that just added to the very expensive day. We parked in the closest parking deck to the Sparks Clinic at UAB, but they would not validate his ticket, since we had not used the “right” deck. Of course, they had not told me that I should park in any particular one when they called to tell me the appointment time. So, instead of costing $4.50 to park, it cost us $15.00!!! We were not at all happy about that!! UAB will be hearing from me about that today!!

When we did get to Cleveland, the little town in north Alabama where the funeral was going to be, we ate at a very nice looking local restaurant. Not surprisingly, considering the way the rest of the day had been, their prices were high. So, we took the lunch special of the day. The vegetables were great, but the meat was lousy. The waitress seemed genuinely shocked when hubby complained about it.

I really was worn out by the time the graveside funeral was over, so we begged off on eating at the church with the family and headed straight home. This was my sister in law’s side of the family, so I really didn’t know that many people there anyway, and I am not comfortable in unfamiliar social situations. I have always been that way, but it’s gotten worse now that I jerk and twitch so much.

So we had a full day, one that I am glad to have over with. I have an appointment with Dr. Watt’s team in May, with an MRI to be schedules before then, so I will have to wait that long to find out the results of the EEG. Should be very revealing, since I displayed the full range of all my jerks, tics, smirks, and shakes while the brain’s electrical activity was being graphed.

I am optimistic that all these tests are going to show more than they did two years ago, and that they will be able to decide what is wrong with me with more certainty. Of course, I know there is no such thing medically in life as a certainty, but I can rely on God to get me through it all. Patience, Rosemary, Patience.