posted
Hi there to fellow people out there who actually know what this word means!! First of all, I just have to say that, though my heart goes out to each and every one of you, it soooo great to find other people who actually have this condition besides myself!! Even though they may not know the cause or know the cure, just the fact that it actually has a name and that other people actually have it is good enough for me! I have battled with this thing off and on for years. When I was 19-24, the shaking started and I went through rounds and rounds of all sorts of tests and they couldn't find anything. Although I have to say my favorite was when the one doctor told my mother that "I was just doing it to get attention". Absolutely!! Then, thankfully, it went away for about 10 years or so and then, several years ago, it came back and progressively has gotten worse, to the point where I am not able to work at the moment (but hopefully not for long). Even though all the EEG's, MRI's, CAT scans and blood work came back normal, no one could deny the shaking. So, for lack of anything else to call it, they called it, "Abnormal Involuntary Muscle Movement Disorder." Now, I was told that that was not actually a diagnosis but since it was not Epilepsy or Parkinson's or Wilson's Disease or Huntington's disease, or anything that they knew of, that that was the only thing left to call it, even though it really didn't exist. So, they sent me packing back to my Primary for "Relaxation Training". Now, no offense intended, but what part of the word Involuntary were they not getting here? How exactly does one learn to control involuntary muscle movement that are involuntary and that one has no control over? Ah, a question for the ages! Anyway, they then tried me on all sorts of drugs, some working for alittle while, some not working at all. They tried to pin it on a parasite that I had pick up from overseas and tried me on very heavy rounds of antibiotics, all of which did nothing. They tried me on Physical therapy, accupuncture, Chinese Herbal Medicines, Vitamins, Herbs, etc... all with no effect.In fact, the Naturopath gave me such large doses of B6 vitamins that were later deemed very dangerous. I finally found a Neuologist who specialized in Neuro-Muscular Disorders who actually called it an idiopathic movement disorder that was paroxsymal and was actually very angry at the other doctors for writing it off as "all in my head", especially since I had even seen a Neuro-Psychologist who told me that I was dealing with it very well and that he had no idea had to help me but that it was definitely not a psychological issue at all! But it wasn't until I came across the this web site and happened to read under the Paroxysmal Dyskinesia section that I finally found an actual name and the missing link for my condition. The was the kinesigenic part that explained everything! I should probably explain: as you all my already know, the kinesigenic part means that the shaking may be brought on by outside, voluntary movement. That was it! Because my particular type of shaking was highly unusual: It was only brought on by other people or things touching me. So, when ever anyone shook my hand, gave me change at the grocery store, or bumped into me at all, even the cat rubbing his tail up against my leg, that simple voluntary outside movement towards me would set off the "attacks". What would happen is as soon as anyone or anything touch me, my whole entire body would freeze, my legs would go limp and I would fall to the ground and my entire body would start shaking uncontrollably from anywhere from 3 minutes to as along as 3 hours continually. I never lost consciousness, except the one time last year when I fell to the ground twice during an attack and suffered two concussions in a row that took almost a year to heal. But I always knew exactly what was happening, even though the shaking would pull at all the muscles in my entire body, including my face, forsing my eyes closed. It never hurt but it had a four second pattern to it and the shaking was extremely intense. They likened it to the intensity of a woman in labor but minus the pain except every muscle in my entire body would shake intensely or any amount of time and there was nothing that would make it stop. It just had to stop on it's own. So,that makes life intersting - trying to function normally while making sure that you don't touch any one or anything and that they don't touch you! I became very good giving "air hugs" to my family and friends. Recently, the good Neurologist that I have been working with started me on Dilantin but had to start me out very very slowly because by now, my system had become so trashed from all the medicines over the years that I was highly sensitive to all types of medicine.But over the last few months, he has increased it gradually until now, when the cat comes up and wraps around my leg for a hug, I still freeze and then shake but now, only for about 10 seconds. That's huge for me! I have also found a Doctor through the Movement Disorder Virtual Institute web site near my home that is a famous Neurologist that is highly skilled in this very specific type of PKD and other movement disorders! Incredible! They actually have a movement disorder center in the very hospital that he works in and a huge clinical research lab based in a well known univeristy where they are right now doing research on PKD! So, for those of you with PKD, take heart! Anyway, sorry that this is so very long but I would love to hear from anyone who can in anyway relate to part or any of my experiences with PKD, particularly having the shaking being set off by outside voluntary movement or mainly, by when people or things bump into you. That has always been a fun one trying to explain to the doctors - I only shake when people bump into me - right! But now that I know that there is an actual medical condition that is brought on in this exact way, I finally feel like all those things that I have been fighting to get people to believe about this condition all thesee years is really true!! Does anyone else feel this way? If so, I would love to hear from you! Take care and as my husband so dearly calls me now,shakey cheese hopes to hear from anyone with a similar story soon. Goodbye~ Sincerely, Suzie Q
quote:Originally posted by Suzie Q: Hi there to fellow people out there who actually know what this word means!! First of all, I just have to say that, though my heart goes out to each and every one of you, it soooo great to find other people who actually have this condition besides myself!! Even though they may not know the cause or know the cure, just the fact that it actually has a name and that other people actually have it is good enough for me! I have battled with this thing off and on for years. When I was 19-24, the shaking started and I went through rounds and rounds of all sorts of tests and they couldn't find anything. Although I have to say my favorite was when the one doctor told my mother that "I was just doing it to get attention". Absolutely!! Then, thankfully, it went away for about 10 years or so and then, several years ago, it came back and progressively has gotten worse, to the point where I am not able to work at the moment (but hopefully not for long). Even though all the EEG's, MRI's, CAT scans and blood work came back normal, no one could deny the shaking. So, for lack of anything else to call it, they called it, "Abnormal Involuntary Muscle Movement Disorder." Now, I was told that that was not actually a diagnosis but since it was not Epilepsy or Parkinson's or Wilson's Disease or Huntington's disease, or anything that they knew of, that that was the only thing left to call it, even though it really didn't exist. So, they sent me packing back to my Primary for "Relaxation Training". Now, no offense intended, but what part of the word Involuntary were they not getting here? How exactly does one learn to control involuntary muscle movement that are involuntary and that one has no control over? Ah, a question for the ages! Anyway, they then tried me on all sorts of drugs, some working for alittle while, some not working at all. They tried to pin it on a parasite that I had pick up from overseas and tried me on very heavy rounds of antibiotics, all of which did nothing. They tried me on Physical therapy, accupuncture, Chinese Herbal Medicines, Vitamins, Herbs, etc... all with no effect.In fact, the Naturopath gave me such large doses of B6 vitamins that were later deemed very dangerous. I finally found a Neuologist who specialized in Neuro-Muscular Disorders who actually called it an idiopathic movement disorder that was paroxsymal and was actually very angry at the other doctors for writing it off as "all in my head", especially since I had even seen a Neuro-Psychologist who told me that I was dealing with it very well and that he had no idea had to help me but that it was definitely not a psychological issue at all! But it wasn't until I came across the this web site and happened to read under the Paroxysmal Dyskinesia section that I finally found an actual name and the missing link for my condition. The was the kinesigenic part that explained everything! I should probably explain: as you all my already know, the kinesigenic part means that the shaking may be brought on by outside, voluntary movement. That was it! Because my particular type of shaking was highly unusual: It was only brought on by other people or things touching me. So, when ever anyone shook my hand, gave me change at the grocery store, or bumped into me at all, even the cat rubbing his tail up against my leg, that simple voluntary outside movement towards me would set off the "attacks". What would happen is as soon as anyone or anything touch me, my whole entire body would freeze, my legs would go limp and I would fall to the ground and my entire body would start shaking uncontrollably from anywhere from 3 minutes to as along as 3 hours continually. I never lost consciousness, except the one time last year when I fell to the ground twice during an attack and suffered two concussions in a row that took almost a year to heal. But I always knew exactly what was happening, even though the shaking would pull at all the muscles in my entire body, including my face, forsing my eyes closed. It never hurt but it had a four second pattern to it and the shaking was extremely intense. They likened it to the intensity of a woman in labor but minus the pain except every muscle in my entire body would shake intensely or any amount of time and there was nothing that would make it stop. It just had to stop on it's own. So,that makes life intersting - trying to function normally while making sure that you don't touch any one or anything and that they don't touch you! I became very good giving "air hugs" to my family and friends. Recently, the good Neurologist that I have been working with started me on Dilantin but had to start me out very very slowly because by now, my system had become so trashed from all the medicines over the years that I was highly sensitive to all types of medicine.But over the last few months, he has increased it gradually until now, when the cat comes up and wraps around my leg for a hug, I still freeze and then shake but now, only for about 10 seconds. That's huge for me! I have also found a Doctor through the Movement Disorder Virtual Institute web site near my home that is a famous Neurologist that is highly skilled in this very specific type of PKD and other movement disorders! Incredible! They actually have a movement disorder center in the very hospital that he works in and a huge clinical research lab based in a well known univeristy where they are right now doing research on PKD! So, for those of you with PKD, take heart! Anyway, sorry that this is so very long but I would love to hear from anyone who can in anyway relate to part or any of my experiences with PKD, particularly having the shaking being set off by outside voluntary movement or mainly, by when people or things bump into you. That has always been a fun one trying to explain to the doctors - I only shake when people bump into me - right! But now that I know that there is an actual medical condition that is brought on in this exact way, I finally feel like all those things that I have been fighting to get people to believe about this condition all thesee years is really true!! Does anyone else feel this way? If so, I would love to hear from you! Take care and as my husband so dearly calls me now,shakey cheese hopes to hear from anyone with a similar story soon. Goodbye~ Sincerely, Suzie Q
Posts: 32 | From: washington state | Registered: May 2005
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i have some other triggers but that is definately my worst. there are days when showers are almost impossible. i have had the water touching me trigger an attack and ended up on the floor unable to get to the spicket (sp?) wishing we had a larger hot water heater. and we had 2 really large ones. i'm working on the shaving the legs issue. hair cuts?? sometimes ok sometimes no way.
it's lots of fun trying to get thru stores and places like malls. my kids want to go to disneyland this summer. any ideas? it's crazy.
i miss hugs from my kids so much although i can do kisses!!!
obviously, there's lots more but these are just kind of the funny ones i think. i'm sorry that you have this too. wasn't it nice to find out exactly nwhat it was called!!?
i tnink my email address is on here if you would like to talk. please take care of yourself.
Posts: 32 | From: washington state | Registered: May 2005
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posted
I'm so glad to find out there is someone else out there with the same Condition as me. I have PKD too.
Posts: 17 | From: Nottingham | Registered: Mar 2006
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quote:Originally posted by Martin Lewis: I'm so glad to find out there is someone else out there with the same Condition as me. I have PKD too.
Hello Martin Lewis! Before I found this web site, I had never had met anyone with this condition, or had even met anyone who had even heard of it - until Budder made her relpy above (Bless you, Budder!) and now yourself. I use to have people make really ignorant comments to me (yes, it's not just children that can be cruel but adults too!) such as "Wow, if this were the Middle Ages, they would problably have put you in a Freak Show because your condition is so weird! Either that or they would have put you into an insane asylum." Wow, that really makes one feel great! And that comment came from a so called "friend" from my church, no less! It's amazing what ignorance and studidity can do! Now, I don't mean to sound super critical but these are real comments that were made to me in regards to my PKD. It's also hard because when people start to understand it alittle bit, and that they can't touch you or it will make you start to shake, they become afaid of you, or that's what happended to me, anyway. They don't want to hurt you or to set off your shaking attacks, so they start to just stay away from you altogether-partly in kindness but it's not like you can catch it through the air! For me, that makes it hard because people stop calling you, thinkging you are "sick", stop visiting you because they don't want to hurt you and basicly, fade out of your life altogether because they don't really know or understand what is wrong with you, feel awkward or uncomfortable around you so they would just rather not deal with you and one by one, they slowly fade away. Has anyone else had this experience? Thank goodness for family - I am very very fortunate to have a wonderful husband who completely understands (he use to be an EMT in the ARMY and worked in a MASH unit - so I have a built in EMT everywhere we go - and that had come in very handy many times! I like to call him my little RADAR! - I am a huge M*A*S*H fan!) Anyway, I Budder and Martin, do you ever have other symptoms with your PKD? I also have these other weird syptoms that no doctor has ever been able to figure out - they all just look at me with glazed over eyes and shake their heads, having no idea what I am talking about. The strangest ones are that, sometimes, when it gets bad, the shaking with come on spontaneously every six hours, even with no one touching me. (I think that's the PNKD- the non-kinesigenic kind that happens spontaneously.) When it's bad, I will sometimes shake spontaneously for up to 2 hours continuously at a time. Also, both my fingers and toes will start to tinge and swell up (we call them swollen hot dog fingers, just for fun) and the middle of my back will burn like it's fire. My heart will race, I sometimes get a bad headache, sometimes will get all stuffed up, sometimes will have an asthma attack and my mind will race 50 million miles an hour. It keeps me awake every night, like clock work. I go to bed at 10pm and on the button, will wake up with all these syptoms at 4am, 6 hours later with all these symptoms, for 2 hours. It's NOT a panic attack or anxiety attack - they tried me on all sorts of drugs and it never did anything. They have done blood tests for Kidney or Adrenal problems and found nothing. Even the doctors have no idea how to help me on this. Then, after 2 hours of all these symptoms, they suddenly just go away, for no reason and I can finally go back to sleep. But in the morning, when I wake up, I often will get all these symptoms again, and the fatigue and burning back makes me feel like I have been run over (twice!) by a freight train!
Sorry my entries are so long but do either of you or anyone else get any or all of these symptoms? These are in addition to the shaking symptoms. I am never sure if all these things are related or two sepate issues. And no matter what I do, they never go away. They don't respond to vitamins, herbs, medicine, food, acupuncture,physical therapy or even naturopathic medicine. It's very frustrating! But, on occasion, for one day, they suddenly go away but always come back the next day, no matter what I do. And people always say to me, "What did you do to bring on these syptoms? What did you do? What did you eat?" and it's taken me along time to come to realize that it does NOT depend on anything that I do - they are completely involuntary responses that I have absolutely no control over - because for along time, I thought it was just something I was doing, or eating or not doing or not eating - but it's not. It's taken me along time to come to terms with a condition that I have no control over and not to blame myself for a condition that has no know cause or cure. Does anyone else feel that way? If so, I would really like to hear how you have dealt with it.
Again, sorry this is so long but it is so great to be able to be able to speak intelligently with others who know exactly what I am talking about!
quote:Originally posted by Suzie Q: Hi there to fellow people out there who actually know what this word means!! First of all, I just have to say that, though my heart goes out to each and every one of you, it soooo great to find other people who actually have this condition besides myself!! Even though they may not know the cause or know the cure, just the fact that it actually has a name and that other people actually have it is good enough for me! I have battled with this thing off and on for years. When I was 19-24, the shaking started and I went through rounds and rounds of all sorts of tests and they couldn't find anything. Although I have to say my favorite was when the one doctor told my mother that "I was just doing it to get attention". Absolutely!! Then, thankfully, it went away for about 10 years or so and then, several years ago, it came back and progressively has gotten worse, to the point where I am not able to work at the moment (but hopefully not for long). Even though all the EEG's, MRI's, CAT scans and blood work came back normal, no one could deny the shaking. So, for lack of anything else to call it, they called it, "Abnormal Involuntary Muscle Movement Disorder." Now, I was told that that was not actually a diagnosis but since it was not Epilepsy or Parkinson's or Wilson's Disease or Huntington's disease, or anything that they knew of, that that was the only thing left to call it, even though it really didn't exist. So, they sent me packing back to my Primary for "Relaxation Training". Now, no offense intended, but what part of the word Involuntary were they not getting here? How exactly does one learn to control involuntary muscle movement that are involuntary and that one has no control over? Ah, a question for the ages! Anyway, they then tried me on all sorts of drugs, some working for alittle while, some not working at all. They tried to pin it on a parasite that I had pick up from overseas and tried me on very heavy rounds of antibiotics, all of which did nothing. They tried me on Physical therapy, accupuncture, Chinese Herbal Medicines, Vitamins, Herbs, etc... all with no effect.In fact, the Naturopath gave me such large doses of B6 vitamins that were later deemed very dangerous. I finally found a Neuologist who specialized in Neuro-Muscular Disorders who actually called it an idiopathic movement disorder that was paroxsymal and was actually very angry at the other doctors for writing it off as "all in my head", especially since I had even seen a Neuro-Psychologist who told me that I was dealing with it very well and that he had no idea had to help me but that it was definitely not a psychological issue at all! But it wasn't until I came across the this web site and happened to read under the Paroxysmal Dyskinesia section that I finally found an actual name and the missing link for my condition. The was the kinesigenic part that explained everything! I should probably explain: as you all my already know, the kinesigenic part means that the shaking may be brought on by outside, voluntary movement. That was it! Because my particular type of shaking was highly unusual: It was only brought on by other people or things touching me. So, when ever anyone shook my hand, gave me change at the grocery store, or bumped into me at all, even the cat rubbing his tail up against my leg, that simple voluntary outside movement towards me would set off the "attacks". What would happen is as soon as anyone or anything touch me, my whole entire body would freeze, my legs would go limp and I would fall to the ground and my entire body would start shaking uncontrollably from anywhere from 3 minutes to as along as 3 hours continually. I never lost consciousness, except the one time last year when I fell to the ground twice during an attack and suffered two concussions in a row that took almost a year to heal. But I always knew exactly what was happening, even though the shaking would pull at all the muscles in my entire body, including my face, forsing my eyes closed. It never hurt but it had a four second pattern to it and the shaking was extremely intense. They likened it to the intensity of a woman in labor but minus the pain except every muscle in my entire body would shake intensely or any amount of time and there was nothing that would make it stop. It just had to stop on it's own. So,that makes life intersting - trying to function normally while making sure that you don't touch any one or anything and that they don't touch you! I became very good giving "air hugs" to my family and friends. Recently, the good Neurologist that I have been working with started me on Dilantin but had to start me out very very slowly because by now, my system had become so trashed from all the medicines over the years that I was highly sensitive to all types of medicine.But over the last few months, he has increased it gradually until now, when the cat comes up and wraps around my leg for a hug, I still freeze and then shake but now, only for about 10 seconds. That's huge for me! I have also found a Doctor through the Movement Disorder Virtual Institute web site near my home that is a famous Neurologist that is highly skilled in this very specific type of PKD and other movement disorders! Incredible! They actually have a movement disorder center in the very hospital that he works in and a huge clinical research lab based in a well known univeristy where they are right now doing research on PKD! So, for those of you with PKD, take heart! Anyway, sorry that this is so very long but I would love to hear from anyone who can in anyway relate to part or any of my experiences with PKD, particularly having the shaking being set off by outside voluntary movement or mainly, by when people or things bump into you. That has always been a fun one trying to explain to the doctors - I only shake when people bump into me - right! But now that I know that there is an actual medical condition that is brought on in this exact way, I finally feel like all those things that I have been fighting to get people to believe about this condition all thesee years is really true!! Does anyone else feel this way? If so, I would love to hear from you! Take care and as my husband so dearly calls me now,shakey cheese hopes to hear from anyone with a similar story soon. Goodbye~ Sincerely, Suzie Q
posted
Hi, my daughter has had PKD since she started walking at 1 1/2 years approx. It was fist named Paroxystic Choreoatetosis, she is now 24 years old and we have tried every kind of medicine there is, and tried a huge variety of medicines and nothing has completely taken her symptoms away. Her movements are triggered mostly by initiating a movement after she has been resting and as she has grown the jerks which are generalized have been easier to control or hide most of the time but it is disappointing to keep trying new medicines every 3 or 4 weeks or so and never really finding one that really controls it.
Posts: 31 | From: Monterrey, N.L. Mexico | Registered: May 2006
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posted
With me it comes on with either people touching me (without warning mainly) or without even moving. But it's mainly when I make sudden movements or it can be whilst I am walking or even the smallest of things like having a drink of Water whilst sitting down. I'd find it impossible to carry a Tray as this would set it off. In the end I applied for Disability Living Allowance where I was granted the Higher Rate for Care as my 'attacks' would even occur whilst using the Toilet. So I need someone in the House just in case something serious happens. Though I don't have a Carer.
I developed PKD when I was 13 years old and I've had it since. I'm now 23 years old.
Posts: 17 | From: Nottingham | Registered: Mar 2006
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quote:Originally posted by mex06: Hi, my daughter has had PKD since she started walking at 1 1/2 years approx. It was fist named Paroxystic Choreoatetosis, she is now 24 years old and we have tried every kind of medicine there is, and tried a huge variety of medicines and nothing has completely taken her symptoms away. Her movements are triggered mostly by initiating a movement after she has been resting and as she has grown the jerks which are generalized have been easier to control or hide most of the time but it is disappointing to keep trying new medicines every 3 or 4 weeks or so and never really finding one that really controls it.
I am sorry to hear about your daughter having PKD. I completely understand about trying new medicines, getting your hopes up and then it not working and possibly, having to deal with side effects from the various medicines. Have they ever tried her on Dilantin? They tried me on many, many drugs, all that never worked but then recently, they tried me on Dilantin, increasing it very slowly every month until the shaking is starting to not be as bad when people touch me. They also did a Dilantin/Free Dilantin Blood test every time they increased it (the level in the blood is suppose to be between 10-20. If it gets to high, it can actually make the shaking worse.) So, they increased it by 100mg's every month for the past months. Now, they are up to 700mg's once a day, at night, because it can make you sleepy and it seems to be helping!! I still have the attacks - when someone or something touches me, I still freeze and then shake but now, the freezing only lasts for about 10 seconds and the shaking only lasts for about 10 seconds as well and sometimes, I just freeze and don't shake at all!! So, thus far, the Dilantin is actually helping. I hope this information was helpful.
quote:Originally posted by Martin Lewis: With me it comes on with either people touching me (without warning mainly) or without even moving. But it's mainly when I make sudden movements or it can be whilst I am walking or even the smallest of things like having a drink of Water whilst sitting down. I'd find it impossible to carry a Tray as this would set it off. In the end I applied for Disability Living Allowance where I was granted the Higher Rate for Care as my 'attacks' would even occur whilst using the Toilet. So I need someone in the House just in case something serious happens. Though I don't have a Carer.
I developed PKD when I was 13 years old and I've had it since. I'm now 23 years old.
quote:Originally posted by Martin Lewis: With me it comes on with either people touching me (without warning mainly) or without even moving. But it's mainly when I make sudden movements or it can be whilst I am walking or even the smallest of things like having a drink of Water whilst sitting down. I'd find it impossible to carry a Tray as this would set it off. In the end I applied for Disability Living Allowance where I was granted the Higher Rate for Care as my 'attacks' would even occur whilst using the Toilet. So I need someone in the House just in case something serious happens. Though I don't have a Carer.
I developed PKD when I was 13 years old and I've had it since. I'm now 23 years old.
posted
Martin Lewis, I can totally relate to your condition! Even the cat coming up and "head butting" me to get me to pet her or rubbing her tail up against my leg can set it off. I was wondering - was it difficult to get the Disability? I have been on Long Term Disability with the company I work with for over a year now and one of their stipulations is that they require that you at least try and apply for Social Security Disability. So, I have done this but it's really hard trying to even fill out the forms because I don't "Fit" into any of their catagories and it's hard to explain - that I am completely incapacitated during one of these attacks but between them, I am OK. Not 100% but not totally incapacitated. I am still waiting to hear back from them. I have found that I always had to fight long and hard with this condition, for any type of disability. Has that been your experience as well? Anyone else have this experience?
posted
Has anyone found any other books, articles or papers on PKD? If so, I would be very curious to hear from you on what you have found. Thanks! Cheers!
posted
What I've found that is very complete and most informative, is the information you find in www.dystonia.comPosts: 31 | From: Monterrey, N.L. Mexico | Registered: May 2006
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