Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
OK, I am bringing forth a very sensitive subject to me right now. (One that has thrown me into a tailspin & sent me into "research mode" AGAIN!
I was referred, accepted, and seen by a neuro at a large University Hospital specializing in Movement Disorders earlier this month. After an extremely brief time spent on answering a few general health questions I was asked to go thru a brief "touch your finger to you nose", "how many fingers am I holding up" type exam, and then walked a hall. I was not allowed to share any of the various paperwork I had brought with me (including my timeline of symptoms).
I was then told, "You don't have PD! If you did, by now you would be a mess." The neuro clamped her lips tightly together refusing to answer any questions from myself or my husband. I cannot describe just how horrific we were treated. But, to deliver such news with no help on what is going on with me was just beyond belief! I even said, "You're a neuro, right? What do you think it is then?" (No answer.)
Do I want PD? NO! Do I want to know what is causing various symptoms so that I can figure out what I am dealing with and what I can possibly do to make it better? YES!!!! When I received a firm diagnosis THREE YEARS AGO I felt I had actually put the puzzle pieces together and was ready to do battle & find out all I could about PD. I've made it my mission to educate others about PD. I had no choice but to take an early retirement last year when my symptoms were affecting the level of work I could produce and the neuro felt if I could get away from the high stress level I worked under on a daily basis my health would improve.
I called my neuro I regularly see the next morning, but she was booking 6 weeks out....I had an appt. 5 weeks away. I asked if she could maybe just call me....Nope (but they would send a message to her nurse - she did call me, but she said I would have to wait for my appt in 5 weeks).
Soooooo....I am listing my symptoms and asking for your help. Any comments are more than welcome. I am just LOST right now & know this group to be not only knowledgeable, but compassionate as well.
Tremors (Started in right arm & head - now head is so much worse & jaw, as well as chattering teeth are included). Putting on makeup each morning has become such a chore, due to both my head and arm shaking, that I don't wear any on the days I am not leaving the house. Oh - also have those wonderful "inner tremors" where I'll ask my husband if my head or another part of me is shaking...if he says he can't see it, then I know I'm right & it's just within me.
Ankle/Foot twists - My foot will twist so far around that I am actually looking at the bottom of it! It hurts sooooo bad and leaves my ankle sore for days - in fact I recently developed a numb spot that runs from a part of my ankle to the top of my foot (I'm hoping it has to do with nerves & the feeling will come back). This can happen while I am sitting or wake me up in bed.
Cramps - in any one of the 4 quadrants of my legs. I find it happens most often happens in my lower left calf. The area will knot up hard as a rock and can last anywhere from hours to days. I've tried rubbing it, stretching it, heat, cold - it just does what it wants to do & lasts for however long it decides. OUCH!
Lip quivers - If I get really stressed my lips will start quivering (if I'm trying to hurry to get my things & get out the door, if I am running late, etc.). I have to admit the first time I caught sight of this in a mirror it TOTALLY freaked me out!
Eye twitching - it can be the occasional twitches running less than 3 minutes up to twitches that are so extreme they actually close my eye (when this happens it has lasted on & off for 2-3 days).
Imbalance Issues - Frequent falls or "near falls" (where I have become pretty creative at ways to keep from falling....last summer I ended up hanging from our rose arbor - quite the show for the neighbors I'm sure! LOL). I have broken an arm, been treated at Urgent Care for fractured ribs, and wear bruises most all of the time somewhere on my body.
Tingling "creepy" feeling in legs - kind of like little "zingers" of some type going down my legs...gives them a weakness.
Digestive issues - If I eat a big (for me) meal too late, I am usually up all night with what feels like a "big ball" in my stomach. It's painful, so cannot even lay down in bed or sleep. I live with this issue almost every single day, so must pay close attention to what I eat & when.
Loss of smell & taste - at times it is a TOTAL loss of both (most of the time), if I eat spicy (Mexican or Italian) I can usually taste a bit of something. I have lost 65 lbs (not complaining!).
Dizziness - when I get up from working on a task I can get so dizzy I will feel so dizzy - sometimes I will feel like I am close to passing out. If I get up from my chair too fast, I'll get dizzy.
Cognitive issues (lack of motivation, trouble organizing & completing tasks, "spinning in a circle" or "befuddled". Difficulty finding the right word to use in a conversation. I know what I am wanting to describe, but I cannot come up with the word. Also, often miss a letter when handwriting a word - then have to go back & try to cram the letter in.
Soft voice - often others cannot hear me (have seen speech therapist & saw improvement from the exercises I was given, but have to remember to "yell" (in my mind) to be heard). Also, if I talk much my voice becomes hoarse & I find myself clearing my throat LOTS.
Anxiety/Depression - I never know when some little something will cause high anxiety within me. It just comes - not triggered by any particular situation (stress or happiness..doesn't matter). I'll admit it - I can get really down. I'm a positive person and fight back, but there are many times no matter what I try I am just depressed - even though I take medication for this.
Swallowing/Choking Issues - I was seen by a Speech Path and learned tongue exercises that have helped. She also gave me a list of various foods that I should keep in mind as either preferred or those I need to be especially watchful of if I choose to eat them. She disagreed with my neuro and said I WAS aspirating & needed to be aware of the chance of developing pneumonia. I can choke on my own saliva, anything I drink, as well as food (chicken is the worst for me).
EXHAUSTION
Constipation - my neuro has me using stool softeners, it's just that some times I forget to monitor this issue and end up in real trouble (too embarrassing to go in to description here).
Handwriting - It has gotten positively hard to read most of the time. I really have been working on slowing down & exaggerating my letters - trying to make an improvement. My signature doesn't look much like it used to!
Neck/Shoulder tightness - just went for a massage (with the same gal I have seen off & on for the past 2-3 years) and she said I had waited way too long...I was a mess of knots & tight spots. I could go weekly - if only finances allowed.
Tightening of throat - my throat will feel as if it is locking up at random times. Sometimes it will be hard to swallow & I am just sure I am getting sick and must have swollen glands. Goes away after a night (?) of sleep.
Lack of sleep - I often only sleep about 4 hrs. I'll wake up in the wee hours of the morning (2-3am) and cannot go back to sleep no matter what "trick" I have tried.
Loss of expression in my face - I went thru this phase on & off for a while & had people always asking me "Are you mad?" or "What's wrong?". It hasn't happened lately, no idea why it came or why it seems to have left.
Probably leaving some things out, but this is the general idea. Please note: I am NOT on any PD meds.
What frustrates me the most is unless you live with all of these symptoms, you have no idea what it takes to appear "normal" and go about life on a daily basis.
Please don't misunderstand me. I am NOT whining. I am laying it all out there with fear....hoping you can help me where the years of being seen by various doctors apparently has not. The thought of starting back at "square one" overwhelms me - I'm just not sure I can do all that again.
I will sincerely thank you all in advance for your understanding & help!
I was referred, accepted, and seen by a neuro at a large University Hospital specializing in Movement Disorders earlier this month. After an extremely brief time spent on answering a few general health questions I was asked to go thru a brief "touch your finger to you nose", "how many fingers am I holding up" type exam, and then walked a hall. I was not allowed to share any of the various paperwork I had brought with me (including my timeline of symptoms).
I was then told, "You don't have PD! If you did, by now you would be a mess." The neuro clamped her lips tightly together refusing to answer any questions from myself or my husband. I cannot describe just how horrific we were treated. But, to deliver such news with no help on what is going on with me was just beyond belief! I even said, "You're a neuro, right? What do you think it is then?" (No answer.)
Do I want PD? NO! Do I want to know what is causing various symptoms so that I can figure out what I am dealing with and what I can possibly do to make it better? YES!!!! When I received a firm diagnosis THREE YEARS AGO I felt I had actually put the puzzle pieces together and was ready to do battle & find out all I could about PD. I've made it my mission to educate others about PD. I had no choice but to take an early retirement last year when my symptoms were affecting the level of work I could produce and the neuro felt if I could get away from the high stress level I worked under on a daily basis my health would improve.
I called my neuro I regularly see the next morning, but she was booking 6 weeks out....I had an appt. 5 weeks away. I asked if she could maybe just call me....Nope (but they would send a message to her nurse - she did call me, but she said I would have to wait for my appt in 5 weeks).
Soooooo....I am listing my symptoms and asking for your help. Any comments are more than welcome. I am just LOST right now & know this group to be not only knowledgeable, but compassionate as well.
Tremors (Started in right arm & head - now head is so much worse & jaw, as well as chattering teeth are included). Putting on makeup each morning has become such a chore, due to both my head and arm shaking, that I don't wear any on the days I am not leaving the house. Oh - also have those wonderful "inner tremors" where I'll ask my husband if my head or another part of me is shaking...if he says he can't see it, then I know I'm right & it's just within me.
Ankle/Foot twists - My foot will twist so far around that I am actually looking at the bottom of it! It hurts sooooo bad and leaves my ankle sore for days - in fact I recently developed a numb spot that runs from a part of my ankle to the top of my foot (I'm hoping it has to do with nerves & the feeling will come back). This can happen while I am sitting or wake me up in bed.
Cramps - in any one of the 4 quadrants of my legs. I find it happens most often happens in my lower left calf. The area will knot up hard as a rock and can last anywhere from hours to days. I've tried rubbing it, stretching it, heat, cold - it just does what it wants to do & lasts for however long it decides. OUCH!
Lip quivers - If I get really stressed my lips will start quivering (if I'm trying to hurry to get my things & get out the door, if I am running late, etc.). I have to admit the first time I caught sight of this in a mirror it TOTALLY freaked me out!
Eye twitching - it can be the occasional twitches running less than 3 minutes up to twitches that are so extreme they actually close my eye (when this happens it has lasted on & off for 2-3 days).
Imbalance Issues - Frequent falls or "near falls" (where I have become pretty creative at ways to keep from falling....last summer I ended up hanging from our rose arbor - quite the show for the neighbors I'm sure! LOL). I have broken an arm, been treated at Urgent Care for fractured ribs, and wear bruises most all of the time somewhere on my body.
Tingling "creepy" feeling in legs - kind of like little "zingers" of some type going down my legs...gives them a weakness.
Digestive issues - If I eat a big (for me) meal too late, I am usually up all night with what feels like a "big ball" in my stomach. It's painful, so cannot even lay down in bed or sleep. I live with this issue almost every single day, so must pay close attention to what I eat & when.
Loss of smell & taste - at times it is a TOTAL loss of both (most of the time), if I eat spicy (Mexican or Italian) I can usually taste a bit of something. I have lost 65 lbs (not complaining!).
Dizziness - when I get up from working on a task I can get so dizzy I will feel so dizzy - sometimes I will feel like I am close to passing out. If I get up from my chair too fast, I'll get dizzy.
Cognitive issues (lack of motivation, trouble organizing & completing tasks, "spinning in a circle" or "befuddled". Difficulty finding the right word to use in a conversation. I know what I am wanting to describe, but I cannot come up with the word. Also, often miss a letter when handwriting a word - then have to go back & try to cram the letter in.
Soft voice - often others cannot hear me (have seen speech therapist & saw improvement from the exercises I was given, but have to remember to "yell" (in my mind) to be heard). Also, if I talk much my voice becomes hoarse & I find myself clearing my throat LOTS.
Anxiety/Depression - I never know when some little something will cause high anxiety within me. It just comes - not triggered by any particular situation (stress or happiness..doesn't matter). I'll admit it - I can get really down. I'm a positive person and fight back, but there are many times no matter what I try I am just depressed - even though I take medication for this.
Swallowing/Choking Issues - I was seen by a Speech Path and learned tongue exercises that have helped. She also gave me a list of various foods that I should keep in mind as either preferred or those I need to be especially watchful of if I choose to eat them. She disagreed with my neuro and said I WAS aspirating & needed to be aware of the chance of developing pneumonia. I can choke on my own saliva, anything I drink, as well as food (chicken is the worst for me).
EXHAUSTION
Constipation - my neuro has me using stool softeners, it's just that some times I forget to monitor this issue and end up in real trouble (too embarrassing to go in to description here).
Handwriting - It has gotten positively hard to read most of the time. I really have been working on slowing down & exaggerating my letters - trying to make an improvement. My signature doesn't look much like it used to!
Neck/Shoulder tightness - just went for a massage (with the same gal I have seen off & on for the past 2-3 years) and she said I had waited way too long...I was a mess of knots & tight spots. I could go weekly - if only finances allowed.
Tightening of throat - my throat will feel as if it is locking up at random times. Sometimes it will be hard to swallow & I am just sure I am getting sick and must have swollen glands. Goes away after a night (?) of sleep.
Lack of sleep - I often only sleep about 4 hrs. I'll wake up in the wee hours of the morning (2-3am) and cannot go back to sleep no matter what "trick" I have tried.
Loss of expression in my face - I went thru this phase on & off for a while & had people always asking me "Are you mad?" or "What's wrong?". It hasn't happened lately, no idea why it came or why it seems to have left.
Probably leaving some things out, but this is the general idea. Please note: I am NOT on any PD meds.
What frustrates me the most is unless you live with all of these symptoms, you have no idea what it takes to appear "normal" and go about life on a daily basis.
Please don't misunderstand me. I am NOT whining. I am laying it all out there with fear....hoping you can help me where the years of being seen by various doctors apparently has not. The thought of starting back at "square one" overwhelms me - I'm just not sure I can do all that again.
I will sincerely thank you all in advance for your understanding & help!
then it is something else. Insist on getting satisfactory answer .there are some tests she can do.If she refuses report her conduct to medical association . Her treatment of you is not rite.
No - we are not on Obamacare. We have health insurance thru my husband's work. Just got the bill today & it is going to be applied to our $2500 deductible. Oh - YAY! We get to pay almost $500 out of our pocket for being mentally abused!
OK - Z. You think these sound like PD symptoms? (I remembered a few more symptoms after I posted, but think I just may have set the record for the LONGEST post this group has ever had.....for that I apologize.
Yes - we asked her what she thought it was then...NO COMMENT. I asked what could be causing those painful ankle/foot twists. NO COMMENT. Honestly - I tried asking several questions. I had built myself up that I was going to the TOP in the field & the appt. was to have lasted two hours. My husband jumped in with some good questions concerning what he observes. NO COMMENT. I even said, "Do you think I'm making this sh** up?" (I was sobbing & had lost her respect by then....I am ALWAYS a courteous patient, but we spent almost more time asking questions that went unanswered other than the meanest, coldest glare you can imagine. Oh - and all this time the exam door was open for staff & whoever to hear!) Finally - I looked at my husband and said, "It's obvious she's through with us." NO COMMENT. I packed up my things sobbing those deep, ugly cries. I just wanted her to leave so I could sit down & have a good cry before leaving the exam room, but she stood there with her arms crossed tightly across her chest & only left when we did.
I have went over & over this a zillion times in my mind trying to think what I possibly could have said that set her off. But, pretty much from the start she was snappy & rude. The next day I wondered if she had thought about how she treated me? Did she feel bad that she had taken an optimistic (and nervous) 56 yr old woman and reduced her to a sobbing mess? Since she had gone that far, why didn't she just come out and tell me what she really thought was going on?
Yes - I have decided to call and find out the name of the Director of that department. I've waited to make sure I could approach this calmly. I cannot imagine I was the first nor will I be the last patient she has treated this way. I will be composing a letter and will cc'ing my referring doctor, too. I want to make sure all are on the same page.
My neuro keeps saying I am too young for meds and flatly refuses to even discuss it. So - I have learned tricks to walking ("the dance") and laugh a lot at the crazy things my body does.
My head is spinning from looking up diseases/conditions similar to PD. I have found some that may have some of my symptoms, but then they seem to have some major components that I simply do not have. Guess it's wait to see my current neuro & see what she says. Only this time - I am NOT going in to talk with her about current symptoms, worsening symptoms, etc for our 5 min time frame. I'm going to zip my lip, listen to see what she has to say, and NOT expect a dime's worth of help. I'm tired of being upset over what she doesn't do and after this last experience I think maybe the "watchful waiting" approach may be my only choice.
Brer T
waiting is not what you want to do,
Hugs Zlatica
Brer T
Can your GP help you find someone since he/she probably knows you best?
Can you travel to my area? John Hopkins is full of the most compassionate and amazing medical team that I have ever met. Now you got me thinking - I am going to PM you!!
Hugs!
Letter written. Letter sat for a couple of days to re-read and make sure it clearly stated what I needed to say. Husband read letter for me to let me know if what I had written was accurate from his point of view (Yep!). Called & found out the name of the doctor in charge, as well as the correct address to use to make sure it gets directly to him. Letter mailed!
In the letter I told him that I did not include our entire conversation with the doctor, but he was more than welcome to call me and I would discuss with him any questions he might have. I have asked to know what he finds out from his investigation of this incident - either by calling me or sending his response via mail. I explained that I could not, in good conscious, have even one other patient treated this way.
I'll keep you posted........
That said, I've been in similar situations. The first TWO neurologists that I saw wouldn't even test me. Both of them put in my charts that I failed my mobility tests BUT WAS TOO YOUNG to have Parkinson's and sent me back to my GP without running so much as blood work. I was 22 when I started tremoring.
I am 26 now and have a great neurologist. He did the same tests, noted that I failed almost all of them, and was skeptic because of my age. After begging him to take me serious he threw me on a dose of Sinemet to see if it would work, and I immediately responded. The AMOUNT of Sinemet he had to put me on to make an impact that the tremors were ALMOST gone is alarming. I've been on Sinemet since June and in a typical seven-year-run am somewhere near six and a half.
He sent several years working in a Parkinson's clinic so he knows what he is dealing with; he sent me to a Movement Disorder Specialist who didn't even want to treat me. She called him after my first appointment asking why he even bothered because while I failed SOME of my tests, and struggled through the rest, I was too young to have any kind of PD symptoms that could be IMPACTING... to which he pointed out HOW MUCH Sinemet I was on, and then SHE took me serious.
Parkinson's is a diagnosis of exclusion which can make it very hard to treat, and I think MDS have a strong understanding of this and diagnose it as PD only when NOTHING ELSE could cause whatever symptoms they are being faced with. I also don't know how old you are, but PD is very rare in people under 40. It's becoming more common but in cases like mine (I was 22 when the shaking started), nobody wants to touch it with a ten foot pole.
That said... don't give up!
Because I went four years without treatment, my PD ran rampant. I have a more advanced stage of it, and my neurologist feels that if ANY ONE PERSON had taken me seriously sooner I wouldn't be facing the treatment options I am now. I am running out of time with Sinemet and my higher doses are already wearing off; I will be lucky if I last another six months on it. From here I can move to either beta blockers and phenylbarbital (a TERRIBLE IDEA) or a Deep Brain Stimulator (which I begin neuropsychological testing for next month).
I know it's hard, but don't give up. It might take a few tries for someone to take you seriously, but someone will. Don't take no for an answer because you deserve more and are worth better, and you know your body better than anyone else.
Glad that you plugged in to this group of PD'ers. Their support has been immensely helpful to me.
Glad too, that you wrote your letter. Shoddy treatment needs to be confronted... for the benefit of all of us. So, thank you.
Whatever its outcome however, you now need to stay focused on your future. And the first step -- as many have suggested here -- is finding a competent, communicative neurodoc you trust.
I have three suggestions to add to the others:
1) Take your time. While your need is acute, you need to resist jumping at the earliest prospects. Do your homework to make sure it is going to be a good fit.
2) Use and expand your networks. Most of us have pretty good docs that we could recommend, but we don't live where you do... which is Oregon, right? For starters, you might check with the Oregon chapter of Parkinson's Foundation:
http://www.parkinsonsresources.org/section.cfm?wSectionID=258
(Candidly, I have not found the local chapter here to be very helpful, but yours might be quite different.)
Also consider informal, chatty, over-the-backyard-fence connections. Try to connect with people who consume those kinds of services, or people who would know about them: from church groups to PD'ers you see in the supermarket.
3.) Keep some simple notes (calendar or 3x5 cards) so you can see your own progress, maybe go back to good resources you don't need now.
Keep us in the loop and let us know how you are doing.
Beekeeper