Tag Archives: Neurologist

Tummy’s Been Worse

Day by Day with a Movement Disorder Posted on by  

I ended up calling the Neurologist’s call service, as stomach cramps have joined the nausea, even though I’ve been super careful with what I’ve eaten today. I’ve had crackers with the Sinemet, too, but nothing’s helping.

I was extremely impressed with how quickly I got a call back from the doctor on call this weekend. He’s phoned in a prescription to our pharmacy, on the chance they leave an answering machine on when they’re not open. I’m to call the drugstore in the morning to see if they got the message. If not, I’ll have to phone the doctor’s office in the morning, and they’ll call in the prescription. All this rigamarole, because we live in a little town that’s lucky to even have a drugstore at all, even if it is closed at night and on the weekend.

In the meantime, he told me to not take any more Sinemet until I get this new medicine. I will be taking it with each dose of Sinemet from now on. He said the name of the med, but I forgot it by the time I got off the phone.

Developing Our Plan of Attack

Day by Day with a Movement Disorder Posted on by  

In order to understand my approach to having a chronic illness, you need to know a little about me and my side of the family. My grandmother had and my Daddy has Macular Degeneration. My Daddy has been legally blind now for over 30 years, gradually losing more and more of his sight, but never doing anything to prepare himself for being blind.

I’ve said for years that if I were ever diagnosed with the beginnings of MD, I’d immediately start learning Braille and take classes on how to take care of myself from a low vision standpoint.

My approach to any illness is to search the Internet for every bit of information I can find. I have a Chemistry major, with a strong background in Biology and Biochemistry, so the technical papers usually make at least some sense to me.

With that said, it shouldn’t be so surprising that I’ve spent almost all this week researching everything I can find about Parkinson’s Disease. I’ve found bits and pieces of information on various sites that I’ve bookmarked for myself, but the links that have the most information, presented clearly, I’ll be listing in the right hand column.

DH and I are working together, bouncing ideas around as we try to understand how to balance the medicine with the foods that interfere with the medicine, but are necessary for good health. I did my first set of the PD exercises today, and DH bought a different cereal for me, based on the nutrition information I found.

By the time I see the Neurologist again, I should have a good idea what I need to ask him about. Of course I’m still assuming the DX is going to be PD, but at least I feel like I’m doing something besides waiting for the next appointment.

If I Could Dance … I Would!!!

Day by Day with a Movement Disorder Posted on by  

I went to the Neurologist today, and I feel like I had a very productive visit this time. He is agreeing with the diagnosis of Peripheral Neuropathy, but he thinks something else is going on at the same time, as not all my symptoms seem to fit that diagnosis. First of all, the heavy metals test came back negative, so we don’t have to worry about the EPA site, at least. All the other blood tests came back OK, too. One test is having to be done again, as the lab goofed on that one.

Anyway, he’s given me a prescription for Sinemet to take for three weeks and then see him again to see if it makes a difference in my walking. This is a Parkinson’s medicine, which is what I’ve thought he was thinking all along, since Mama had Parkinson’s. She didn’t have tremors, and I’ve only had some shakiness when I was weakened by the colitis or really tired.

I finally feel like I’m getting somewhere!!! At least in 3 weeks we’ll know if it’s Parkinson’s or something similar, and I really think it is. I’m looking forward to being able to walk better. I know I shouldn’t be getting my hopes up so, but right now I’m almost ecstatic!

Looking Forward to Doctor’s Appt. Tomorrow!

Day by Day with a Movement Disorder Posted on by  

I’ve been able to stay busy this last week, and the time has really flown by, thank goodness. I’ve had plenty of excercise, so the weakness in my legs is definitely not from lack of use from the extended illness I had with the colitis attack. And I’m off all the steroid capsules, too, which means I’ve only got two more pills to go and I’ll be off all the colitis meds.

Tomorrow we find out the results of all the lab tests they ran on me this last week. We also find out if I have to have a repeat of the EMG tests, because the last doctor did not test any upper body areas. Since I do get trembly sometimes in my hands, I’m hoping he’ll do the test again, even though it’s certainly NOT a fun test. I’ve already told him I’d do it again in a heartbeat if he needs me to. He knows how uncomfortable the test is and is trying to spare me that, if possible, but I want whatever will give the most accurate diagnosis, discomfort or not.

I just hope tomorrow’s appointment doesn’t end up leaving me feeling disappointed that things are moving too slowly, the way last time’s did. I really like this Neurologist, and I have full confidence in his abilities, so I’ll just have to put my trust in God that he has led me to the right man.

I had my first experience with someone trying to help me when I didn’t need their help tonight. I was getting ready to go down the steps at church, which means DH takes the walker and I hold on to the railing and carefully take one step at a time. One of the church ladies grabbed my free hand to help me, and she really was trying to insist on helping, even though I kept telling her I would be just fine. It surprised me that I found that very irritating. I must remember to ask if I can help someone, instead of assuming they need my help.

Diagnosis is Taking Too Loooooong!!!

Day by Day with a Movement Disorder Posted on by  

I went to the Neurologist again yesterday, and was disappointed with the visit, to tell the truth. I know he’s a busy man, because we purposefully picked the very best Neurologist we could get. But I feel like he’s so busy that this whole process of diagnosing is dragging on interminably, because the appointments are so far apart, and so little seems to be accomplished each time I see him. It’s that last part that has me disappointed.

He wanted us to get the full study from the doctor who did the EMG, so he could read through it. If his nurse had called us prior to yesterday’s visit, we could already have gotten it, and he could have had that already done. As it is, he still doesn’t know if he will want me to undergo that test again, so I’m feeling very frustrated. We went and got the report and brought it straight back to Dr. S’s office, and I have another appointment in two weeks.

He did say, after looking at the MRI that we had taken to him of my last lumbar vertebrae series, that he now agrees with the Orthopedic doctor that my Peripheral Neuropathy was not caused by my Degenerative Disk Disease. So, it’s not my brain, and it’s not my back.

He had a lot of blood tests done, and I have to do a 24 hour urine catch on Sunday/Monday and return the jug to the lab Monday. That’s to test for heavy metals, since we do live within a quarter of a mile of an EPA toxic waste site that’s cleaned up now, but we lived here many of the years the factory was in operation.

It’s looking more and more like he thinks I have Parkinson’s, even though I’m not exhibiting a lot of the typical symptoms.

Of course, I’m still holding out that it’s just from all the stress I’ve been under and still am under. I’m writing this post from my 101 year old Daddy’s house. He usually stays by himself, and I come in to fix breakfast and supper. Meals on Wheels brings lunch. We call him during the day, and that is usually enough, but he was awfully weak this morning and hurting in his back, so I’ve stayed with him today, and I’ll spend the night here.

This whole business of every step feeling like I was dragging my feet through molasses started sometime last October, but our DD was in the hospital then, and I was staying with her, so I put off doing anything about it until March. The epidurals the Orthopedic Dr. prescribed did a great job of getting rid of the pain, but the walking did not improve. So here I am, and it’s September, almost a year later, and I’m still wading through mud with every step. Let’s just say my patience is wearing pretty thin.

A Truly Normal Saturday!

Day by Day with a Movement Disorder Posted on by  

For the first time since the end of March, I got out my digital camera and took a series of pictures of an item to put on eBay last night. That’s the first time I’ve touched that camera in all this time. I don’t think I could have held it steady much sooner than now, as I was so weakened by my bout of colitis. Anyway, it felt good to actually get a new listing up again, and I plan to get at least one up each day from now on, and hopefully two most days.

My strength has improved some, what with all the exercise I’ve been doing, but my walking is still very shaky. I have a Neurologist appointment this week, and I’m really looking forward to that. I’ve been really patient, and I’m praying that this will be the time for all the tests that will help him figure out what’s wrong with me.

I am so very thankful to God for my DH, who has been so attentive and so supportive through all these months. I don’t know what I would have done without him. I don’t know how people, who don’t have Jesus to hold onto, make it through the scary times that life can throw their way,either.

Uncle Bill

Day by Day with a Movement Disorder Posted on by  

I need to remember to tell Dr. S about Uncle Bill, Mama’s brother, because he died of Lou Gehrig’s Disease. I know that’s not what I have, but he still needs to know it. Mama was originally diagnosed with Parkinson’s, which I did tell him, but that was later changed to Alzheimer’s Disease. Trouble is, she never did have the tremors. Now that I’ve seen what a real Neurologist does in the way of diagnostic testing, I don’t think that first diagnosis of Parkinson’s was even valid for Mama. It may well be that I have the same thing she had. That remains to be seen, but it just may be that this is genetic.

A Personal Journal

Day by Day with a Movement Disorder Posted on by  

I’ve been waiting for six weeks to see Dr. S to find out what he thinks is wrong with my legs. I tried to remember everything I could that he might possibly need to know about my past history. I still forgot to tell him about the Bolt Factory and the functional dysphonia diagnosis I had before I quit teaching. I also forgot to tell him that I taught Chemistry for a few years, but I really don’t think that has anything to do with it at all. I did give his nurse my notes about that when we took the old back films to them. But I’m still forgetting to tell them about Uncle Bill!!

He did the kinds of hammering around that I expected and said that I definitely had diminished responses in my legs, but the upper body responses seemed normal. He was sorry that the EMG I had already had did not include any tests of the upper body and wants to repeat that test. He watched me walk, asked DH if I were that slow with everything I did, which I’m not. I did tell him I feel the shakes at times with my hands. I definitely have trouble handling pills and money, and my memory is not as good as it used to be, either, but then I’m not as young as I used to be, either.

I told him about the MRI Dr. Stan had done years ago that showed increased CSF pressure and the negative Babinski test, so he wants a repeat of the brain MRI.

He showed us what a Parkinson’s walk typically looks like, and that’s not what I’m doing. I’m not walking like the typical Peripheral Neuropathy either, so that’s the puzzle of it. I told him about my concerns that it might be psychosomatic from worrying about DD so much and being with her through all her PN hospitalizations. He said that would be the diagnosis of last resort, if I understood him correctly.

Anyway, now I’m trying to be patient while HealthSpring takes their beaurocratic time processing the request for a brain MRI and a repeat of the EMG to include the upper body as well. He wants to do a series of blood tests, too, to check for B12 deficiency and toxic metals I’m guessing.

I liked him and I have confidence in him.