Tag Archives: diagnosis

Coughing, but OK

Day by Day with a Movement Disorder Posted on by 2

Well, I’m still coughing, and the x-ray came back all clear, which is what I expected. I was a little concerned that it might be asthma, since it was worse in the mornings and at night. That fit those symptoms. But the doctor’s nurse said it’s allergies and sinus drainage pooling in the main bronchial tube.

So, I put myself back on an OTC antihistamine that I’ve had good luck with before, and it’s just wait the stuff out now.

I’ve gone back to exercising as much as I can. And we went on our Date Day yesterday. We had to quit a little early, though, as I was exhausted. I’m back in that de-conditioned state again. It will be awhile before I’m back up to the level of exercising I was doing before I got sick. I’m thoroughly enjoying the recumbent bike, and hubby is using it too. It’s sitting in the middle of our living room, so we can watch TV and bike at the same time. Not high decorating style for sure, but right now I just don’t care. If we have company it can be moved temporarily.

I’m pretty much in the habit of taking the glucose readings now, and I’m using FitDay to log in my food intake and exercise minutes. I found this site when our daughter was on a feeding tube, and we needed to keep track of her eating. It’s really a good way to monitor not only calories and carbs, but all the major nutrients.

I’m going to postpone my Physical Therapy session due for next week. There’s no point in going right now, as I am weaker than I was last time. I’ll just keep working on what he has already given me. I do have my annual OBGYN appointment next week, and I’m anxious to see how my bone density is coming along. I’ve been on Calcium now for 2 years, so hopefully I’ve improved some. I don’t drink carbonated beverages, and we get lots of nutrients from the raw spinach salad we eat almost every day.

So, we continue to do what we can to keep our health level in as good a shape as possible. I continue to read everything I can get my hands on about diabetes, too. We had a leaky water pipe out in the yard that got fixed today, so all in all I’ve had a great day.

Still Coughing, but Talking Better

Day by Day with a Movement Disorder Posted on by  

I’m still having bouts of this horrible thick cough, mostly at bedtime and on getting up. I don’t smoke, and never have, but it makes you wonder what I must be allergic to to set off these spasms. I called the doctor’s office again yesterday to let them know the cough syrup just wasn’t working at all. This was the one that was supposed to knock me out, and other than feeling a little woozy the first day, I couldn’t even tell I took it.

So, he sent me off yesterday to have a chest X-ray. I’ve had pneumonia too many times not to know what that feels like, so I’m sure it’s not going to show up that way. This is more like mucus is stuck in the main bronchial tube, and no matter now hard I cough it just stays there. I took the last antibiotic today, so we’ll see what develops.

I’m getting pretty good at pricking my finger and testing my blood glucose. There have been a few times that I felt shaky and hungry the way I was feeling. Those always came on low glucose levels, but none were low enough to be concerned about. I’ve been very good about keeping track of everything I’m eating and trying to keep my carb intake to around 45g per meal and 15g for snacks. I’m also watching the calories, as I really do need to lose weight. I figure if I could lose about a half a pound a week I could be at a good weight in two years. So far I’ve lost a pound. It took me a long time to get this heavy, and it’s going to take awhile to get it off and keep it off. I certainly don’t want any kind of crash diet, on top of all the other health issues I deal with.

I’m finally caught back up with posting requests for help finding lovies on our Search Service. I got way behind when I felt lousy. I’m back to working on my exercise program, doing about half right now, just to ease back into it. My legs got pretty weak the last few weeks. High powered antibiotics do that to me, besides being sick.

I’ve been reading everything I can find about pre-diabetes and diabetes, until I’m finally beginning to absorb what’s involved. There are still a lot of numbers to get stuck in my head – below 70 is low blood sugar, anything over 140 before meals is too high – that sort of thing. But I’m working on it, and have cut out a few particularly helpful articles to add to my health binder. I started that when I was diagnosed with Parkinson’s, added articles to it when the diagnosis was changed to Essential Myoclonus, and now I’m added information about Diabetes. I’m beginning to feel like a doctor!!!

I do feel better today than I have since this laryngitis cough strep mess all started.

Hack Cough Wheeze

Day by Day with a Movement Disorder Posted on by 3

Well, we went back to the doctor yesterday, since we did not want to go through the weekend with no improvement in sight. The strep is better, with no sore throat any more, but the horrible congestion in the bronchial tubes that causes spasms of severe unproductive coughing has not budged at all. So, my doctor changed my meds AGAIN. Now I’m on Leviquin, a very high powered antibiotic and Tussionex, a cough syrup with some antihistamine in it. He said I would be very sleepy, but I haven’t been. I did sleep through until about 3AM before a coughing fit woke me up, so that’s some improvement.

I can tell that my legs are wobbly today, which shouldn’t be a surprise, considering how much meds I’ve had and how little moving around I’ve been doing. I’ve spent much of the last few days researching pre-diabetes and diabetes. I’ve gotten fairly adept at the finger sticks, so I’m not wasting as many test strips as I did at first, and I have a pretty clear idea of how my normal diet effects my glucose level. There’s no need to waste the strips, and I can’t see that any purpose is served by continuing to test before and after every meal, so for now I’ve put the test kit aside.

I thought I had lost a pound, but now it appears to be showing up again. That means I need to cut back on my portion sizes a bit more. I’m still counting carbs, and until I’m told otherwise, holding it to somewhere in the 150 – 175 grams a day range, with meals around 40g each. I’m trying to hold snacks to 15g of carbs from fruit. And I have not touched anything sweet since the tentative diagnosis of diabetes was first given to us. I say tentative, because the numbers were at borderline level, and I won’t see the doctor about the diagnosis for a couple of more weeks yet.

I know that diabetics can have sweets in moderation, but I know me, too. It’s much easier for me to stay away from them completely than to use moderation! I can’t imagine me being able to quit after just a piece of chocolate!!! Ain’t gonna happen!!!! Besides, we have strawberries and cantaloupe in the fridge, and they are plenty sweet enough.

I’m encouraged to see that the myoclonus has not acted up while I’ve been battling this infection.

The one negative note is that my doctor told me I probably should not take penicillin again, since I had a localized reaction to the shot for the first time in my life. It’s still hot, red, and swollen after almost a week. I’m sorry to have to add Penicillin to my allergy list, as I know how useful an antibiotic it is for a wide variety of ailments. But, there are plenty of other antibiotics available these days, and they will do just fine.

As usual, I have some good things to say, and some not so good. But I work to stay in a positive frame of mind, knowing that worrying about any of this is not going to help one bit, and can even be hurtful. Instead I choose to learn all I can and stay in a positive frame of mind.

Can’t Blame Everything on Movement Disorder

Day by Day with a Movement Disorder Posted on by 4

I’ve been dealing with intermittent periods of extreme weakness for quite some time now, and have pretty much been blaming it on the Primidone, the medicine I take to control the Essential Myoclonus. My Neuro gave me a prescription for Physical Therapy to develop an appropriate exercise program, and I’ve seem him twice now, about one month apart. I was not pleased with myself, because after about 2 weeks of following his routine, I reached a point where I would feel so weak that I didn’t want to do anything. Even my voice sounded weak.

So, I decided it was time to get an overall checkup at my Primary Physician’s office. He listened to me try to describe how I’ve been feeling, and I was very frustrated, because it’s so hard to put into words how I’ve been acting. Anyway, he ordered a complete blood panel of tests, and I got the results back the next day for most of them. My blood sugar was high, so he ordered a Glucose Tolerance Test, where I had to fast beforehand, have my blood drawn, and then drink a sugary sweet drink. They drew blood two more times at hour intervals, to see if my system handled the sugar overload correctly.

Well, I got the results today, and I was within a few numbers of what is considered to be diabetic. So he wants me to start treatment, and I’m to get a set of brochures about living with diabetes.

I shouldn’t be surprised at this, as I am 66 years old now, and my Daddy and Grandmother both were diabetic. Neither one used insulin, but controlled it with medicine. I’m assuming that’s what he will have me do, too.

The more I read about Type 2 Diabetes, the more I realize that I really have been behaving in ways that are consistent with this diagnosis. I have dry skin that itches, I get shaky weak at times, my energy levels are unpredictable, and I have been constantly feeling hungry. I have had this feeling that if I could just eat the right thing I would get my energy back. Mostly I’ve been filling that need with chocolate. LOL!!

So I instinctively wasn’t too far from the truth. My cells are not getting enough glucose, probably because they have become what is called insulin resistant. So, with too much glucose swimming around in my bloodstream, my cells were screaming for more sugar!!

I’m not the least upset with the diagnosis. Just as I was relieved to find out I had a Neurological Disorder, I am relieved that my doctor was able to pinpoint the source of these strange feelings I’ve been having.

I’ve spent a good bit of time today reading everything I could find online about diabetes nutrition, and thinking about the changes I will need to make in my diet. I know I need to lose a good bit of weight, and now I have the incentive I needed to stop eating chocolate and watch my food portions better.

We’ve been consciously eating Super Foods for several years, so mostly I just need to lower my carbohydrate intake, cutting out all but the occasional the sweets (chocolate).

I look forward to talking with my doctor and getting this under control.

Grieving for a PLM Friend Just Diagnosed with MSA

Day by Day with a Movement Disorder Posted on by 4

Everyone on the PatientsLikeMe forum is grieving along with one of our dear Parkie friends, btrflynana, who has just had her diagnosis changed to MSA.

Multiple System Atrophy is the big gun version of Parkinson’s like disorders, and does not have a good prognosis at all. Most people only live about 9 or 10 years after diagnosis, and much of that time is in severely compromised health. I have been so hoping that she would have good news, as I did when my diagnosis was changed, but that is not to be.

She has a wonderfully sweet nature, and wrote a sad and yet determined post about the new diagnosis this morning. All her family are there to help her through this horrible grieving time, and her online friends are hurting for her and grieving for her, too.

My heart goes out to her and to her family.

“Have mercy upon me, O LORD; for I am weak O LORD. Heal me; for my bones are vexed.”
Psalms 6:2 KJV

Amen and Amen.

Now on Antibiotics for Stomach Inflamation

Day by Day with a Movement Disorder Posted on by  

We received the answering machine message Friday that the Endoscopy biopsies were all good, but did not get a chance to talk to the nurse about what my Gastro had found. So I called first thing this morning, and he is putting me on the pre-packaged set of antibiotics and acid reducer pills normally used with ulcers.

She did say my stomach lining is very inflamed, but she never actually used the word “ulcer”, so I’m assuming it falls more under the term Gastritis. I will have to do the research again on Primidone, because my Neuro said he had never heard of that as a possible side effect.

I do know that Primidone headed me in the direction of constipation as soon as I started taking it, so I was blaming the tummy problems on it. But as bad a reaction as I had to the Clonazepam, it could be that it was that medicine that inflamed the tummy, and I just felt too miserable to realize my tummy was getting worse.

Regardless of where the blame should be, I now have a treatment plan to deal with it. I also remembered to ask her if it was OK for me to continue to drink the decaf versions of all the High Anti-Oxidant teas that I get each day. Hubby is poking a cup at me all day long! LOL!!! But it’s part of our Super Nutrition routine that I am glad to continue. Some days I get as many as a dozen cups of various herbal teas. As you might imagine, I get a lot of exercise just going back and forth to and from the bathroom!

A NEW Name for My Blog

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I have been thinking about changing the name of this blog ever since I was told I did not have Parkinson’s. We were also told that the Peripheral Neuropathy diagnosis was either originally a wrong one, or my nerves had healed. Peripheral nerves can regenerate up to a point, so that may be what happened. Particularly since hubby and I have been doing everything we could to learn about the best foods and best choices among alternative medicines, vitamins, and minerals to assure that I am getting the optimum benefit from everything I put in my mouth.

So, when I started having trouble with Blogger this week, it looked like the ideal time to find a new name for my blog. Who knows what diagnosis they will come up with sometime in the future, so I finally settled on Day by Day with a Movement Disorder. It’s general enough to cover whatever the docs decide to call whatever I have if they change their minds again, and it opens the door for discussing not only the disorder that I have, but other similar disorders.

I have just recently been asked to explain Essential Myoclonus in more detail and also received a request to post something about Dystonia. So I can see that this name may be a good one. I sure hope so. It was not easy erasing that title, after looking at it so many dismal and glorious days. And it will take awhile to change over all the links, etc., that will have to be changed, including a new banner. But it does not all have to be done in one day, that’s for sure!!

GREAT NEWS!!! – My New Diagnosis Is ESSENTIAL MYOCLONUS!!

Day by Day with a Movement Disorder Posted on by 11

I finally got to talk to a nurse on Dr. Watt’s staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson’s, nor anything in the Parkinson’s Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I’m going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson’s PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson’s that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I’m not sure how God can use me in regards to this, but I’m sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson’s, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I’ve tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

Back to Square One Plus

Day by Day with a Movement Disorder Posted on by 6

OK, first of all the plus side of the meeting we had with Dr. Watt’s team this week. My fancy MRI and EEG did not show anything particularly abnormal, and certainly nothing that I need to be worried about. The ultra strong MRI did show signs of several Transient Ischemic Attacks, or TIA, what many people call little strokes. The doctor said they were normal “for my age.” (I hate to think I’ve reached the age where something wrong is normal, but I guess I have, huh.)

My reaction again is not what anyone would have expected. I guess I should have been jumping up and down with joy that I did not have a brain tumor, but all I could do was cry. The whole time he’s telling me that they didn’t find anything that explained my symptoms, I was jerking and wreathing all over the place. I asked him point blank if this could be that I’m just crazy, but he assured me that there really is something physical going on, they just don’t know yet what it is. If I understood him correctly, he says in time my symptoms will become more obvious, so they can make the diagnosis.

The Clonazepam had already made me very depressed, so I have been way low since Thursday. They are weaning me off the Clonazepam, since it did not help, and it was making me feel so depressed. I think they plan on calling in a prescription and trying something else, once I have finished weaning off the Clonazepam.

Hubby was really angry with me Thursday night. We finally talked about it yesterday, although I still begin to cry when I do discuss it or even think about it. He was so mad, because he said I acted like I was disappointed that I DID NOT have a brain tumor or some horrible disease. I really can’t explain it, but to have my body jerking and wreathing and nobody being able to tell me why is extremely upsetting. I know I should just put my faith in God, that this will either improve with time, get worse and provide enough information to make a diagnosis, or stay just the way it is now. If this is the way I will be for the rest of my life, then I am going to have to deal with it somehow. But for now, all I want to do is cry.

The only diagnosis they will even name as a possibility is Tardive Dyskinesia, which just means they think this was caused by some medicine I have taken some time in the past. Trouble is, whatever it was is obviously not in my system now.

They have told me for sure that I do not have Peripheral Neuropathy. I asked him if that meant the original diagnosis was wrong, or if it had been cured. He said it was possible that it was cured, but seemed to be leaning more toward the idea that the original diagnosis was incorrect. I did not get the nerve up to ask him if Parkinson’s was ruled out. That seemed kind of pointless right now, since Parkinson’s is so hard to diagnose anyway.

So, I’m left feeling miserable, with no coping strategies working for me at all. I’m crying even as I write this. I cried in church today. I cried in the car yesterday. That’s basically all I’m doing – just crying. It’s a grief that I can’t name, but it’s there.

Misery Loves Doesn’t Love Company

Day by Day with a Movement Disorder Posted on by 12

I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.

I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be “normal” for a little while so badly that I didn’t care that it would cause a fight. He won’t let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.

I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.

But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist’s couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I’m taking a med to stop some of the very things it will give me – doesn’t make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can’t control the left side of my face, but it’s actually quite the opposite, the muscles on the left pull it that way.

I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I’m crying at almost everything right now, and can’t stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of “his” kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn’t take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.

I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don’t think I can deal with it right now. Somehow I just have to make it through until next Wednesday.

I’ve completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I’m trying very hard to stay busy and focused on something besides me, but it ain’t workin’!!

Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It’s real, and I’m not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!