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Joseph: Based on the info you give, I would definitely see a neurologist again, but find a movement disorder specialist. If it does turn out to be Parkinson's stick around - except for the occasional bickering, you can learn a lot from this list! :) Good Luck! Wendy -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]] On Behalf Of Joseph Essertier Sent: Thursday, December 02, 2004 8:04 PM To: [log in to unmask] Subject: Introducing myself and asking a question Hello. My name is Joseph Essertier. I am an American living in Japan. I teach English and comparative culture at a college in Nagano City, Japan, where the Winter Olympics were a few years ago. I also do research on modern Japanese literature. I subscribed to this list because i wanted to ask some questions to people who know about and have experience with Parkinson's. Experience has taught me that patients usually know some things about their own health problem that their doctors don't know or understand. I have not been diagnosed with Parkinson's, or even tested for it, but i just started to wonder about this disease the other day. I didn't know anything about the symptoms, except for the classic tremors that one sees in famous people with PD in the mass media. I just read about the symptoms on the internet for the first time two days ago and was surprised that i have many or most of the symptoms. I thought it was a disease that elderly people got -- only elderly people -- and that the tremors were very extreme, like the whole arm shaking. I read this article yesterday: http://www.umm.edu/patiented/articles/what_parkinsons_disease_what_cause s_it_000051_1.htm In that article, the parts that caught my attention the most, that describe the kind of neurological problems i have been having are: * Tremors may first be only occasional, starting in one finger and spreading over time to involve the whole arm. The tremor is often rhythmic, 4 to 5 cycles per second, and frequently causes an action of the thumb and fingers known as pill rolling. [This is the first time i have heard this expression, "pill rolling," but it describes very well one of the first things that started to worry me -- about 4 years ago. I get that in many different fingers, but mostly fingers in my right hand. I get those, but i also get faster side to side twitches in my fingers, especially during electrical storms, which we get a lot of in Japan. Once in awhile all the fingers in my right hand will start to curl up, like my hand is trying to make a fist but failing. I notice this sometimes while i am standing. Once in awhile i feel embarassed when i'm standing and talking to someone and this happens, and i flex my hand to make it stop]. I also get what i call "twitches" on my lips, eyelids, in my toes, arms, legs, and other places. They only happen when the muscle involved is at rest. I notice them the most when i'm in bed, either when first waking or going to sleep. *Muscles may become rigid ( akinesia). These symptoms often begin in the legs and neck. [I have suffered from a very stiff neck for the last 6 or 7 years, but what surprises me is how on some days, it is perfectly fine, with no stiffness at all. I have tried all kinds of stretching, with no luck. I also experience rigidity in my foot, where i cannot pull the foot/toes upward, esp. when riding a bike. And i have some rigidity in my fingers sometimes]. *Intestinal motility (the ability to swallow, digest, and eliminate) may slow down, causing eating problems and constipation. [In the last year i have developed problems with constipation, for the first time in my life. The worst has been this autumn. My lower abdomen has been hurting when i first wake up each day lately. I have had trouble swallowing for the last few years, to the point where i don't start eating unless i have something to drink close by]. [I have all of the following]: * Orthostatic hypotension. Some patients experience a sudden drop in blood pressure when they stand. This can cause dizziness and fainting. * Changes in sensations of temperature, hot flashes, and excessive sweating. My wife often says during the summer she can't believe how much i am perspiring. * Leg disorders. Cramps and burning sensations in the legs are common. I'm not sure if one would call it depression because i'm usually pretty content with my life and everything, but once in awhile i start crying about things that are not a big deal and the crying becomes uncontrollable, where i want to stop but cannot. (My son recently said to me, to my surprise, that he had never seen me cry -- not that i think that real men don't cry. I'm just not the crying type.) The first time that happened was about 5 years ago while watching a silly soap opera. I don't watch soap operas and watch very little TV in general. Later i could not explain to myself why that soap opera got to me. I don't remember what the story was about at all now. I have had a number of similar crying bouts since then, where later i cannot understand why i was so upset. Most of the other symptoms in this list i guess i experience but am less sure about -- either i'm not sure if my symptom is being described or if mine is not that bad. For example, "shuffling." I am not sure if it looks like shuffling. My stride seems shorter than it used to be, and i sometimes feel a little difficulty in pulling my leg upwards as i lift my feet for a step forward. That could just be tiredness though. But i have been making a conscious effort over the last year or so to pull my legs up higher and take longer strides. I have always been the type who walks fast, but recently i am surprised to find people on the street walking past me, where i am the slow one. And i have had trouble with stairs for the last 7 years or so. About 7 years ago, i remember a friend, who was in her late 50s, say to me as we were walking up the stairs, "Come on old man! Why are you so out of breath." I have always been into exercising and sports -- riding my bike everywhere, running, baseball, and other other things -- and always strong and healthy, so i was surprised to hear her say this, and similar things have happened many times since on stairs. I always have trouble keeping up with the other train passengers while walking up stairs in train stations in Japan now. I'm 37 years old by the way. My thumbs twitch a lot at times, always moving in the direction of the other fingers. Somewhere i read something about excessive salivating as one of the PD symptoms. I have had trouble with that a number of times in the last few years. This autumn i have had two periods of really extreme salivating, both for about 2 weeks. I had some sores in my mouth during the 2nd, latest period, and my dermatologist said the sores would heal naturally. It happens a lot in fall here to people. So that may or not be the same as the other salivating, which i don't remember being accompanied by sores in my mouth. A month or two ago i woke up one day with my pillow case wet from salivating while sleeping. No sores then. Fatigue, of course. I have gone through a few periods of extreme exhaustion, that wouldn't be solved by rest. Three summers ago i had the summer from hell, where i would go to work at 9 AM, leave for home at 4 PM sharp (yes, really easy hours), take a nap until dinner time, go to sleep after dinner, and wake up the next day at 8 AM. All i did was sleep and rest, but was still tired. That lasted for at least 2 months. It was a very hot, humid summer, but i had been through many such summers in Japan before. What was so special about that summer? I still don't know, but i think the last two summers have not been a problem because i changed my diet. I have a near vegetarian diet now with mostly whole grains. I really avoid white bread and white rice now because of the constipation. I was diagnosed with seborrheic dermatitis the other day. That's what got me started thinking about Parkinson's because i read that people with Parkinson's get it a lot. I have suffered from this for at least the last 5 years, but never went to the dermatologist about it. I thought it was just dandruff, which i guess it is, but i have major flaking or scaling on both sides of my nose, and all the other typical places. That has just become steadily worse. Only in the last year did it really start to bother me, where my head and face were incredibly itchy. I have another skin condition, which used to be called "neurodermatitis," which i know because my grandmother had it -- she always wore white cotton gloves because of it -- but is also called "housewife dermatitis" in Japanese. I can't remember the doctor's name for it at the moment. It's like psoriasis. Three years ago i was diagnosed with "panic disorder." I'm not sure if i really have it because usually there is a psychological component. I have had about 5 panic attacks in the last 5 years, the first one on a packed "bullet train," but i rode trains hundreds of times after that without fear, and never had another attack on the train, which is the typical place for panic disorder patients to get them in Japan. (The trains are very crowded and there is less oxygen, so...) The doctor gave me the equivalent of Xanax, in case i had another attack, but i never took it. He recommended that i take another drug every day, but i said no thanks. I avoid drugs of all kinds. If i can live with the symptoms, i'd rather do that than face the side effects of the drugs. Finally, one problem i had that might relate is epilepsy. I had grand mal seizure(s) -- not sure if it was one seizure or more than one -- at the age of 3. I took phenobarbitol for a year or so, until my parents became worried about how drowsy and unfocused i was, and took me off of it. Never had another grand mal after that, but was tested for it in high school, and the doctor said i was still having petit mals, which i occasionally noticed. This is a very long-winded introductory message, but i guess my question is, "Do you think that these symptoms are serious enough that i should go to a neurologist?" I already did go once before, to a neurologist in Japan. That was about 5 years ago, when my symptoms were not as bad as they are now. He said that i was having these twitches in my fingers, toes, and face -- this was before the really strong ones, like all my fingers starting to curl up, or the time my whole right hand wobbled back and forth -- because i was just really "tired." He recommended rest and some tranquilizers. Again, i said no thanks to the tranquilizers. I went to cardiologists twice because the panic attacks made me think i had a heart condition. My heart is very healthy though. The only doctor who actually helped me was a doctor in the States. Without actually seeing me in person, he guessed that i would benefit from omega oils? Fatty acids. So i take cod liver oil now. I also take, on his recommendation, vitamin B complex and magnesium supplements. The magnesium really relaxes me and helps me to sleep through the night. I was waking up too early for awhile. Thanks to him, i think, the twitches have actually been not as bad during the last 2 years, as they were during the previous 2 years. New symptoms have appeared and some other things have become worse, but the twitching, esp. "twitching" of my heart (panic attacks), has become much less frequent. One other thing i did, upon the recommendation of some MS patients on the internet, was have all my mercury fillings removed and replaced with composite resin. I had about 8 "silver fillings," which are like 50% mercury and only 35% silver. That seemed to improve things a little, but nothing dramatic. I am wondering if i should consider Parkinson's and maybe try going to a neurologist once more, maybe a different one here in Japan, or to one in the States the next time i am there. I have read a little about Alzheimer's. An expert on that disease on an MS site recommended that i read a certain book on Alzheimer's, which i assume was because he thought i might be a candidate for that. I think i had low blood sugar problems, which seem to have gone away as i increased the amount of chlorophyl-rich foods i eat and started eating brown rice. Low blood sugar is a cause of Alzheimer's, as is mercury. As mentioned, i considered MS. I also read about ALS. At this point, i don't know what the problem is and i am just avoiding neurotoxins, eating healthy and safe food, getting moderate exercise and rest. That is my strategy in a nutshell. I'm doing okay, except for certain inconveniences and some pain once in awhile, but i am thinking that the sooner i understand what the cause of all these symptoms is, or what the causes are, the better. Thank you. Joseph ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn