Tag Archives: MRI

Earning my Medical Degree

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I decided that the only way I was going to be able to get an accurate picture of what nutrients and supplements I was taking was to get out all the bottles and make a spreadsheet of each and every nutrient in them, with the amount of each vitamin, mineral, enzyme, etc., they contained.

That task took me a couple of weeks, because I kept getting confused by all the various ways different bottles displayed their contents. But I finally finished it, and I now know how much each pill costs me a day, how long a bottle lasts, and exactly what the total is for each supplement. I found one, D3, that I felt sure I was getting too much of, so until I can see a Nutritionist, I’ve cut that dose down considerably.

I’ve asked every medical doctor I’ve seen in the last month or so if they could refer me to a Nutritionist, with very little help in that direction. I saw my Neuro last week, and he gave me a recommendation. I have an appointment with that Dr. in November. Until then I’m basing my supplement regimen on my own attempts to do research.

I feel like I’m studying for a medical degree!! And I’ve about decided I know more about Mitochondrial Myopathy than 90% of the doctors I see.

My Neuro has finally decided that it’s time to try to do something about the ongoing pain I have in my neck, down my arm, up into my head, and in the mid back under my shoulder blade. So I had an MRI Monday. The tech really did all she could to make me comfortable, but lying still on my back on a hard surface is just something I can’t do. About half way through, the nerve from my neck going past my elbow and down to my pinky finger was causing such intense pain that I started having Myoclonic jerks – all that did was make her have to repeat one of the series – and make me lie there that much longer!

I haven’t recuperated from the MRI yet. Still feel completely worn out, plus I had another doctor’s appointment yesterday to make me even more tired. I did get some blood work done there that I’m quite anxious to see the results, compared to a year ago when they were so abnormal. I had another appointment scheduled for tomorrow, but I postponed it.

The epidural is scheduled for next week, and I’m trying really hard to remain positive about it. I had epidurals many, many years ago that gave me great relief, and I’m praying for the faith that I will get relief from the ones coming up. It usually takes several to get maximum results. My fear, that I’ve not totally overcome, is that the steroid will send me into a tailspin of weakness. That has happened to me twice in the last 10 years – once when I was on Parkinson’s meds, and last year when I had massive steroids to treat Angioedema (severe swelling of the lips and face from a drug reaction). Both of those times I was barely able to gather the strength to talk, eat, or move around at all for months afterwards. I pray I don’t have that kind of problem this time.

I do intend to continue with the series of posts I started about the various supplements I take, as it helps me to think through what the benefits to me are and understand more fully the mechanism by which they work to improve my energy.

I covet your prayers over the next week, and I pray for the faith to depend on the Great Physician, who DOES understand my disease completely!!!

My Brain is Empty!! Well…

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OK, that’s what my hubby has to say about it. We had good news today. My blood work was all OK and my MRI was clear, so that seems to leave side effects of my meds as the reason for my terrible memory. As for the jerking, I had one good day, and then it was back like it had been. So my Neuro told me today to double the dose of Neurontin he recently put me on, in addition to the doubled doses of Primidone I was already on. I’m hoping that lets me enjoy our family time for Thanksgiving without jerking or being a zombie. Neither one sounds very pleasant.

So, we have plenty to be thankful for with this good medical report. May God’s blessings be showered on you as well!

I’m Jerking Less, But Walking on Jello

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I have not jerked as much yesterday and today, but I can certainly tell I’m on a new med. I’ve been sleeping much more and much more deeply. That’s not necessarily a bad thing, and will probably become less pronounced as my body adjusts to the Neurontin. My legs, however, have been much less dependable. It’s hard to say if I’m shaking more, losing my balance, or if my legs are just weaker, but whatever is going on … I’m definitely having some difficulty walking. I have that walking on Jello feeling again, and I haven’t felt like that in a long time.

But I’ve only been on the Neurontin for 4 days now, so let’s hope these are side effects that will subside. I should find out the MRI and blood test results Monday hopefully. I don’t expect them to show anything, but it will still be good to have the results. Patient? Me? Not hardly!

Jerking Has Been Much Worse

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I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.

So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.

I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.

The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)

3T MRI Today

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I had the high powered MRI today. Up until a few years ago it was only used in research facilities, but now it is being used for clinical diagnoses. It uses a much stronger magnet than a regular MRI, which means it gets a much finer image of the brain. That’s the good part.

The bad part is that it is horribly loud. Even with the headset on to muffle it, I found the high pitched sounds at the beginning and somewhere near the middle to be excruciating. I took a whole Clonazepam pill before having it done, hoping it would diminish my tics somewhat, so they could get clear pictures. They also put extra padding on each side of the helmet like halo to further stabilize my head. They had a good cushion to put under my knees, so I did not have to try to keep my legs bent to deal with the back problems. That was a blessing.

We had to walk through about 4 blocks of hospital buildings (all the buildings have crosswalks over the streets)to get to the MRI section, because the Parking Deck we were supposed to use was Full. There was no way I was going to be able to walk back after the test, as I was way too wobbly, so we waited for transport to take me in a wheelchair.

We have two weeks now to wait for our next appointment with Dr. Watt’s team to find out the results of all the tests. so, I’d appreciate it if you would keep us in your thoughts and prayers. There’s still a part of me that cannot let go of the thought that all that has been going on with me for the last two years is psychosomatic. I may not be crazy, but I can’t shake the thought that this is all my fault – that I have brought all these symptoms on myself as a stress reaction to the last ten years plus of difficult care giving. I desperately need to KNOW what is going on. I need strength to survive the wait.

Unexpected Aftermath of EEG Test – Still on Clonazapam

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I had an EEG back when my own Neuro was trying to decide what was wrong with me, so I knew what to expect. Well, I thought I knew what to expect. My “good” left foot has been extremely painful and difficult to walk on for the last few days. At first I blamed it on all the walking we did at the cemetery in my Sketchers, which I now use as Sunday shoes. But I don’t think that was the culprit.

I was on the exam table for about 45 minutes, jerking and shaking the whole time. I can’t lay down flat like that without setting off back spasms, so I put my good knee up and had my bare foot pressed against the thin pad of the exam table. I must have been pushing down on my foot a lot harder than I realized, in an effort to bear the discomfort of all the jerking. It is gradually improving, but I noticed yesterday that my thigh is also aching. My foot was hurting so badly that I had not even noticed the leg. So, I’ve decided that’s what is wrong with my foot, rather than my shoes. Those are the only unclunky looking shoes I have been able to wear, so I am glad that they probably did not cause my good leg to give me so much trouble.

You are supposed to go up with the good and down with the bad leg, so it was comical yesterday at church trying to figure out which foot to lead with. One hurt, and the other shook! LOL I decided it was safer to lead with the painful one, rather than the jerky one. At least I was less likely to fall.

Speaking of shaking, the Clonazapam may be helping some, particularly with my mouth, but I am staying in a stupor, sleeping through my morning pill alarm, and just generally fuzzed out. He says it will go away — I sure hope so. Otherwise, I won’t be able to take this med.

I can’t see any improvement in my foot or my shoulder jerks, though. I’m waiting now to hear about my MRI appointment. I am going to call them today, since we still have not heard from them.

Patience … still haven’t learned it.

I Have Been to THE Appointment

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Well, we went Thursday to see Dr. Watts, the head of Neurology at the University of Alabama in Birmingham, who has a great reputation as a Movement Disorder Specialist.

We were both very impressed with how personable he is. One of the other doctors on his staff did all of the preliminary questioning and testing. He was very easy to be with, too. Most of the tests were ones I have been asked to do many times in the last couple of years. A few were different. They both had me make big smiles with my teeth showing several times, which is not something I remember being asked to do by anyone else, and Dr. Watts had me repeat a few of the tests the assistant had already done.

They also gave me the impression that my family history of neurological problems is an important clue – mother with Senile Parkinson’s or Alzheimer’s – uncle with ALS – aunt with depression, drug addiction, alcoholism – grandfather was senile, possibly Alzheimer’s? Until they asked lots of probing questions I had never connected my Grandfather’s behavior and my Aunt’s behavior as being pertinent. That’s why doctors ask things over and over, isn’t it.

Of course, they asked me a million questions about what my symptoms were like, and when and how they started, many questions asked several times. Some I could answer, and some I really couldn’t. He was very interested in knowing about anti-depression and tranquilizer drugs I have taken in the past. I have been on several for short periods of time because of the stress of caring for our parents and our daughters, but I couldn’t tell him much about which ones I have taken. I should be able to get that information from my Primary and from our Pharmacist, plus I rounded up a bunch of prescription bottles of them that I had kept – just in case.

Dr. Watts sat down right in front of me, looked me in the eye, smiled, and talked with me. I had no sense of him being in a hurry to move on to the next patient. That is so rare in doctors these days, and certainly not what I expected out of such a highly renowned specialist.

OK, so now to what happened. I put on quite a show of jerks, tremors, and facial tics the whole time, partly because I was so nervous about what they would find or not find. There is a big part of my mind that is just sure this has all been a psychological problem, but at least he never said that. At least not yet.

I gave a pint of blood in the lab (OK, so I’m exaggerating – but it was maybe 8 vials full), looking for some clue as to what is going on. He talked to me about the possibility of some kind of antibody/autoimmune problem where my own body is causing the problems. He also seemed to think it might be symptoms caused from one of the medicines I have taken in the past.

He has also ordered an MRI at UAB. He says their MRI equipment is different from others I have been in, in that it is more powerful and may see something that the others did not. Plus, it’s been 2 years since I had a brain MRI, and whatever is going on might show up now that hadn’t progressed enough to show back then. They will call me with that appointment, so I don’t know when that will be.

He talked with his assistant, Dr. D, about lots of things it might be, with all kinds of medical jargon. Dr. D was jotting down notes the whole time and seemed to be making a list of possible diagnoses as they discussed my symptoms. Every once in awhile Dr. Watts would ask me to do something or ask more questions. It was exactly like watching a real live “HOUSE” team in action. When he was through talking back and forth with Dr. D, Dr. Watts gave us a layman’s explanation of some of the possibilities. I am not going to list them, since obviously they can’t all be it, and maybe even none of them are “it”. I did come home and get busy Googling every term I could remember hearing them discussing. You knew I would do that, didn’t you. LOL!

He did put me on a titrating dose schedule of Clonazepam, to see if that would calm down the jerks and tics. He said I would be sleepy with it at first, but that this would wear off as my body adjusted to it. I am to take 1/2 tablet at night for a week, then morning and night, and work up to 1 full and 2 halves a day. I have an appointment to see someone else in the practice in May to go over the findings. He said that Dr. D and Dr. Watts would be in on the conference with us at that time.

At this point about all I do know is that it is looking less and less likely that I have Parkinson’s, but that I do have some type of Movement Disorder as yet to be named.

We’ve not told family or friends about all this yet. They know I had the appointment but not why I had it. We decided there was no point in making anyone else worry about all this. We will wait until we actually know something to tell them. I can write it all here, which helps me process it all, because nobody I know personally reads this blog.

Sitting MRI and a Full Night’s Sleep

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Well, I had my Standing MRI on my neck yesterday. I was having some strong tremors when I got there, so the technician changed it to a Sitting MRI! LOL!! He also put a lightly restraining halo on my head, and I managed to stay still through the whole 30 minutes. He said I did just fine.

Of course I won’t find out anything until next week probably. I’m guessing that he will prescribe Physical Therapy again, particularly since I had such a terrible reaction to the Celestone steroid shot for my poison ivy. It depends on just how much damage he sees, I guess.

I have my Neurologist appointment next week, so I will be talking to him about how I should proceed. He may have me stop taking the Zelepar, as that seems to be the med that gives me the most interaction warnings. It does not play well with others!

I have an appointment with my Sleep Apnea Specialist next week, too. He should be dismissing me, hopefully. I am sleeping a full 8 hours almost every night now. And it has made a miraculous difference in my daytime sleeping. Actually, I’m not having ANY daytime sleeping problems, now. I can ride in the car for hours now, and still carry on a conversation with my DH. It’s been years since I could do that. No more jerking awake at the computer from a few seconds of sound sleep out of nowhere. And, I am still on the Requip that gets blamed for this side effect. It wasn’t the medicine after all for me. I was just sleep deprived!

It’s so gratifying to see improvement even in one area of my health. And I have high hopes that Dr. J will fix the pain and stiffness in my neck.

Ahhhh Sleep!

Day by Day with a Movement Disorder Posted on by 2

Well, the Sonata did its job last night, and I actually managed to sleep in one stretch from 10:30 to 4:30 this morning. I feel much more rested for it, too. I’ll probably continue taking it for the next few days in an attempt to retrain my system. I’ve always been the kind who could tell myself when I needed to get up, and I’d wake up on my own. So, it seems like I ought to be able to tell myself to get up later and later, until I’m sleeping a decent number of hours, right?? I wish.

I must have found the correct place to put the step counter on my waist band yesterday, as it showed almost 3000 steps by the end of the day. That’s a long way from 10,000, but a place to start. I spend so much time on the computer …. maybe I need to get one of those treadmill setups where you work on the computer while you walk. It’s supposed to be an easy way to build up your exercise tolerance. They already have book racks on treadmills … why not a place for a laptop??

I’m still on the Tylenol for pain relief, and I’m still using the hot pad when I go to sleep, so the pain is quite noticeable. Mind you, this pain is nowhere near as bad as some other times in my life. That’s why I don’t want to consider any surgery on my knee. If it’s arthritis, though, that will make me braver to use it more aggressively, and if it’s a torn cartilage – I’ll probably end up getting a knee brace. I’m getting anxious to find out. I never did like having to wait for results from tests. I’m like a pouting little kid about that.

Standing MRI & A New Friend

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I had the standing MRI yesterday, and that was quite a bit different from the lying down kind. First of all, it would be much better for anyone who is claustrophobic, as I was not closed in, and they actually had a big screen TV set up so I could watch it.

As far as my procedure was concerned, it was not very comfortable. The whole point was to take the MRI while I was putting weight on the knee, so I had to stand at about a 60 or 70 degree angle, I would guess, and be very still for about 30 minutes. By the time it was over my knee was really complaining, but it was worth every moment of it, if it gets them a better idea of what’s going on in there. I still don’t expect it to be torn cartilage, but soon I will know. Their brochure showed pictures of regular MRI views vs their stand up kind, with obvious disk problems that didn’t show up when the patient was lying down. I may ask for that kind the next time I have to have one on my neck or back, for just that reason. I’ll see the Orthopedist next week to get the report on it.

I’ve added the beginnings of a section on Radial Neuropathy to my side bar, not because I have that, but because I’ve recently started emailing back and forth to a new friend who has it. She and I live in the same small town, I taught her husband, know her MIL, and we’re even members of the same church. And neither one of us knew each other LOL!! It was the Physical Therapist we’ve been going to, who gave her my blog URL, that got us together. She promises that she’ll be posting here, so hopefully she can make contact with others who have problems more similar to hers. My Neuropathy is most noticeable in my legs, although my hands and arms are involved, too. Hers is severe, but I’ll leave it to her to explain it.

I noticed the nausea from the Requip about 11:00AM again yesterday, but a few crackers stopped it. I’m still getting sleepy at the wrong time, as I nodded off early last night watching TV, and I’ve been up since 4:00AM. Actually, I woke up a little after 3:00, but I made myself stay put, thinking I would go back to sleep. No such luck.

I can’t tell any difference in my gait yet, but it may take a week or so before I would notice anything, anyway. I don’t remember reading anything about how long it takes Requip to take effect, so I’ll have to try to do some research on that.

Oh, remember when I was having so much trouble typing? That has definitely improved. It must have been the stress of dealing with Daddy that was making that worse. Parkinson’s folks don’t handle stress as well as others do. I still make more mistakes than I’d like, but nothing like it was for awhile there.

I’ve done my morning exercises, but we’re still not walking at the track. Hubby’s poison ivy is getting worse, not better, and he’s so stubborn I can’t get him to go to the doctor about it. So he’s just slathering on the anti-itch medicines I already had in the house, and he’s trying to stay cool.

Speaking of cool, my temperature regulator is all off whack. I’ll have hot flashes one minute and be freezing the next. I’m putting my jacket on and pulling it off constantly!! This is a Parkies thing, too, so there’s not much else I can do about it.

I’ll spend the day today writing descriptions and finishing the pictures I took this morning, so I can put some new items on eBay tonight. DH has gone grocery shopping, a regular Wednesday morning routine of his, and a chance for him to stop and chat with his buddies. I guess that pretty well catches me up for the day. I hope you are having a good day, too.