----- Original Message ----- From: "Joseph Essertier" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, December 02, 2004 6:03 PM Subject: Introducing myself and asking a question Hello, Joseph: I had many of your symptoms about two years ago. I discussed them with a very wise general practioner who suggested a two week trial of sinemet. After one week, I called him back to tell him that the sinemet showed so much improvement in the symptoms that I believed he had confirmed the diagnosis of parkinsons. I see you've had a lot of replies suggesting that you do see a parkinson specialist and wanted to add my opinion that it worked for me. Merv Swing > 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_causes_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