Tag Archives: brain

Earliest UNDIAGNOSED Symptoms of Parkinson’s Disease????

Day by Day with a Movement Disorder Posted on by 35

Hi Rosemary

First I want to thank you for taking the time to blog. You may not be aware of important I find it to hear others Parkinson’s and day to day life experiences. I appreciate it very much.

I am writing to you because my interest in PD came because I began having symptoms which I suspected might be PD. Fortunately my symptoms are very irregular and inconsistent and not at all affecting my ability to function. The Neurologist I am seeing is not good and is pretty much dismissing my symptoms as nothing. This is fine with me or maybe wishful thinking. I will have resting tremors in my left thumb on occassion as well as jerking limbs, and muscle trembles throughout my body, weakness, etc. Again there are very inconsistent and really could be normal daily problems or another issue. I am very much into Holistic and Natural health so have been doing many things to minimize or slow and potential problem I have. I am 45

I started looking for blogs to see what people reported as initial symptoms long before they were diagnosed with PD. I suspect my symptoms maybe be things people have looked back after they were diagnosed and say yeah, now I remember I had problems long before I realized there were problems. I cannot find such a blog and I am really curious as to when you reflect on your past, when did small signs begin to show up and just ignored or dismissed them. Or whether you had inconsistent symptoms at first. I could be completely wrong, I have no idea!

So after that long winded explanation I have a request. If you have the energy and time at some point, I would like to see a blog from you of your very early years working up to PD. No pressure and no hurry. It would be very much appreciated.

Keep up the blogs and my prayers are always with you

Ted C

Ted wants me to try to look back and pinpoint some of the earliest signs that may have been Parkinson’s symptoms that the doctors missed. I’ve mentioned several things in other posts about what I now believe were warning signs that were not detected. I’m not criticizing the doctors about this, as hindsight is always better than foresight. There’s absolutely no way of knowing if I’m correct on any of the possible signs or not, but I’ll try to list as many things as I can remember that were puzzling at the time and went undiagnosed or ignored.

I really do have back problems that are unrelated to Parkinson’s, as I have Degenerative Disk Disease. There have been many trips to different doctors over the years with back pain and weakness in my legs. There were times as long ago as 15 to 20 years ago when I was walking slower than my parents, who were in their 80’s at the time. Doctors were able to alleviate the pain with epidurals, but the walking problem always gradually disappeared on its own and then returned just as mysteriously.

I’ve had spells of mental fog for many years, which I always blamed on female hormone problems, as I was very young when I had a complete hysterectomy, or on the stress of teaching and later as a caregiver. I was on hormone replacement therapy all that time, though.

I had a diagnosis of Functional Dysphonia while I was still teaching, which means that I could not talk at all, but it was supposed to be psychosomatic. The doctor attributed it to stress. I had bouts of severe laryngitis over a period of many years. I had always been in the choir at church, but about 15 years ago I reached a point where I could not sing through a verse without feeling like I was being strangled, with someone squeezing tightly around my neck. My breath volume was greatly diminished, too.

I went through several years of Migraine Headaches. The Neurologist I was seeing at that time found that I had a positive Babinsky reaction, which means my toes didn’t do what they should have when he scraped along the bottom of my bare foot. He concluded that I had probably had one or more concussions from childhood falls. He did not cure the headaches, but the episodes finally slacked off on their own.

I had a very scary episode about 15 years ago in which my left arm went totally to sleep one night while I was watching TV. It took a lot of massaging and soaking in hot water to finally get feeling back in it. When I went to the doctor about it, she diagnosed me as having Mitral Valve Prolapse. Some years later, I had an echo cardiogram, and there was no indication of MVP. I still have to be careful that I don’t keep my hand too still when we drive for any distance, as it will still go to sleep. The same thing happens in the dentist’s chair. These symptoms are probably from a spur on a cervical vertebra, but who knows??

One symptom that I had never gone to a doctor with was the way I would think I was smiling when my picture was taken, only to see that my face was blank when I saw the photo later. That is a definite Parkinson’s trait, and it’s been something that I was aware of for many years.

There may be other symptoms that I’ll think of later, but I’ve read this post to my DH, and he’s in agreement that these are an accurate list of some of the puzzling things that have happened to me over the years. I hope other Parkies will contribute to this post, too, so it will be as informative as possible.

First Dose of Zelepar, My New Parkinson’s Medicine!

Day by Day with a Movement Disorder Posted on by 2

This is the day I have been waiting for for about two weeks now. I spent that time tapering off of the Requip I had been on, went without any PD medicine yesterday, and this morning I took the first dose of Zelepar.

Zelepar is a quick dissolving tablet form of Selegiline, which dissolves under the tongue. It tasted a little like an orange mint might to me, but it does dissolve extremely fast. There was also a little tingle on the tongue, but nothing uncomfortable. I had read somewhere on the Internet that it tasted bitter, but, for me at least, that was not so. The directions emphasized not to drink any liquids or eat anything at least 5 minutes before or after taking it. I’ll be taking it twice a day while I’m on the samples, but I’m to go back to the Neurologist at the end of this two week trial.

I felt my walking begin to smooth out within about 30 minutes. It may be my imagination, but I think it’s made me a little hyper, too. (Of course, I’ve been so slow the last two weeks it may be I’m just normal now.) I’ll have to be careful when I take the evening dose, if that’s so, or I won’t get any sleep tonight. LOL

I’ve been reading the explanations of what a MAO-inhibitor is, which is the class of drugs that Selegiline falls in, and I think I’ve got it figured out. Basically, it’s some kind of high powered targeted anti-oxidant, that keeps the smaller amount of dopamine that my brain is making from being broken down prematurely. So I’m getting the full benefit of what my brain is naturally producing.

There is also some research that suggests that Selegiline may actually protect the part of the brain that makes dopamine, and possibly slow down the progression of this disease! If you’re not really familiar with Parkinson’s Disease, that may not sound so significant, but it would be quite a break through. All the other meds treat symptoms only. There is a possibility that Selegiline may effect the cause of Parkinson’s!! I’ll not go so far as to get my hopes up for that, but you bet I’ll be watching to see if that turns out to be true.

Tapering Off Requip

Day by Day with a Movement Disorder Posted on by 6

When I went to my Neurologist last Tuesday, we decided I would stop taking the Requip, since it was probably the cause of all my stomach problems, other than the PD itself. Also, it was the likely culprit for my hair loss. So, Dr. S. told me to taper off the Requip before I changed over to the samples of Zelepar he gave me. That meant last week I only had two pills a day, instead of the usual three. Starting Tuesday of this week, I’ve only been taking one a day.

Dopamine is the brain chemical that controls muscle movement, and that’s the one that people with Parkinson’s no longer make enough of. Requip tricks the brain into accepting the chemical in it as a substitute for the dopamine, so it’s called a dopamine agonist. Now that I’m down to one pill a day, I can really tell it! My balance is terrible, and my walking is stilted and jerky.

As long as DH can take over the care giving tasks I’m not up to, I’ll continue to do as much as I can to help Daddy. We’ve only got to make it until next Wednesday, and then I can start taking the new medicine. Zelepar, a special form of the medicine called Selegiline, is a different type of Parkinson’s medicine entirely. It is an MAO-inhibitor. I’ve read what that means a dozen times now, but I still don’t understand it well enough to put it in my own words LOL.

The reason Dr. S. is trying this particular prescription is that it dissolves on the tongue and does not go through my digestive system. It goes straight into the blood stream. With the improvement in stomach comfort that I’m seeing from the Miralax and glycerin suppository combination, I’m hoping this new medicine will be the perfect one for me for the time being.

I do know that at some point I will have to go back to taking Sinemet, which was the first medicine I took. It nauseated me, too, but I’ll cross that bridge when I get to it, because there is a patch form of it in drug trials now.

So for the next few days I’ll be weaving and lurching around here like I’m drunk, but I can put up with it, knowing there’s something new to try just days away. I am ever thankful to God that there are so many researchers working to find new ways of fighting the symptoms of this disease, working on ways to slow its progress down, and ultimately to cure it.

Nothing in My Brain!!

Day by Day with a Movement Disorder Posted on by 2

We got the MRI results today, and everything in the brain scan looks normal!! That’s a big sigh of relief for both DH and me, as we’ve neither one said the words brain tumor out loud, but we’ve both been thinking it, and I’ve been Googling all sorts of possibilities.

I just made the follow up appointment, and that’s going to be another two week wait. That’s the most maddening part about this whole process – all the waiting. But I was determined to get the very best Neurologist we could possibly get on our insurance list, and that means a busy, busy doctor. It’s kind of like a restaurant with no cars out front at lunch time. You wonder what’s wrong with the place. You may have to wait a while at a good restuarant, but the wait is worth it.

We went to the Thrift Store today. It wore me out, but I sure did enjoy getting back to a normal routine and getting out of the house. We also visited for a little while with a lady from church who’s in the hospital, so I’ve had a full day today.

Yippee!! We both can breathe a little easier tonight!!

Went to Bed Early – Woke Up Early

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It’s so aggravating when my sleep schedule gets mixed up like this. I made myself stay in bed until 5 by the hardest, but I had the beginnings of a headache by then. I took 2 of the Tylenol arthritis pain meds, so my neck wouldn’t bother me all day and got up. Now I’m on the computer and yawning. Go figure.

Anyway, my legs and back were aching some last night from all the walking yesterday, but other than that, I’m OK. I did have a little trouble after the MRI yesterday. I was very wobbly after the test and had to ask for some steadying help to get back to the dressing room. DH knows me well and had a bag of M&M’s waiting for me, so I finished the Powerade and ate the peanuts and by then I was OK. We stopped and got one of the new Chick Filet’s chocolate shakes on the way home, too. He knows how to pamper me.

I did some research on brain tumors last night. I really haven’t allowed myself to think in that direction up until now, but getting the brain scan kind of pushed my thinking that way. Knowing I’ve been diagnosed with an angioma in the past, plus having the increased cerebral spinal fluid before, makes it much more of a possibility. We won’t know anything until maybe Friday, so I’ll just stay busy today.

MRI Scheduled!

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April, from Dr. S’s office, called yesterday afternoon, and I’m scheduled for the brain MRI today at 2:30!! I was determined not to spend any time waiting around for HealthSpring to approve the tests, but I sure am glad they did it sooner, rather than later.

I ‘ve had this type of MRI done before. In fact, that’s why he wants this one. When I had it done years ago, it was because I was having severe migraine headaches. I had a terrible headache the day of the test, and it was all I could do to keep from throwing up with all that hammering. At least now, with the Topamax, I don’t go into the test hurting. That previous MRI showed increased cerebral spinal fluid pressure, with a wide white space between the two halves of the brain. It will be interesting to see what this one shows, because the Topamax is the only thing that’s keeping me from having migraines now. I was living off of Goody powders before he put me on those. I’m on the steroids (Entocort) now, too, for the colitis, so that may make a difference, too.

Anyway, this is the MRI where they put your head inside a football helmet thingy, and you have to stay completely still through the whole thing. I don’t know if they will be using dye or not. They did last time. I’ll have to fill up on fluids today, just in case, so the IV will be easier to get, if they need to.