Sharkboy
06-09-2003, 02:09 PM
Hi all,
I'm not new to Healthboards...I had Fibromyalgia a couple years ago, and started visiting that board for support/info. The people there were generally nice. Over time, however, I got a handle on the condition, and today it's basically under control.
But around that same time two years ago, my index finger on my left hand began to twitch...I had no idea what could be causing it; I just assumed it was part of that mysterious Fibromyalgia, though, unlike the other symptoms it did not wax and wane. I asked my doctor at the time and, would you believe he said, "You're nervous; stop being nervous!"? (That wasn't the only time he gave me such a wacky misdiagnosis.) Anyway, after hearing a bit about Parkinsons -- especially resting tremor and rigidity, which I've had in my left hand for awhile now -- I took it to another doctor. He played down the possibility that it was PD, and instead diagnosed it as essential tremor. I was relieved at first, but could not get out of my mind the fact that one of the main things that distinguishes essential from PD is resting tremor. Hence, I took it to another doctor, who agreed with the first doctor's assessment, while at the same time agreed with me that resting tremor was, indeed, suggestive of Parkinson's.
*long deep breath*
So I was referred to a nuerologist. He examined me and ruled out essential (because my tremors don't worsen with movement). He refused to diagnose me with anything. He does think that there are a couple "really mild" symptoms like the resting tremor that point to PD, but he said that even if it IS there's no point in medicating it yet, "as it is not that serious, and there are side-effects to treatment." I left with the feeling that I should have received more clarity from a specialist...but I suppose I shouldn't expect too much when there isn't any direct diagnostic test for PD.
Anyway, I had a blood test taken for Wilson's (which the specialist doesn't really suspect, but felt the need to rule out), and I will find out the result of that test tomorrow.
I'm trying to keep a positive attitude. But things are too unclear to me now, and the future is looming a bit. I'm 32 yrs old. The previous docs did not want to entertain the possibility that it could be PD because I'm young. But people have shown symptoms at earlier ages, thus, wouldn't PD be a possibility? And if it is, when ought they medicate it? It's already a hindrance to my typing, and a little embarassing when I walk and my left hand is trembling uncontrollably...I suppose the reason I'm ranting is that I would like answers when only questions are evident...
Thanks for letting me vent...
Sharkboy
I'm not new to Healthboards...I had Fibromyalgia a couple years ago, and started visiting that board for support/info. The people there were generally nice. Over time, however, I got a handle on the condition, and today it's basically under control.
But around that same time two years ago, my index finger on my left hand began to twitch...I had no idea what could be causing it; I just assumed it was part of that mysterious Fibromyalgia, though, unlike the other symptoms it did not wax and wane. I asked my doctor at the time and, would you believe he said, "You're nervous; stop being nervous!"? (That wasn't the only time he gave me such a wacky misdiagnosis.) Anyway, after hearing a bit about Parkinsons -- especially resting tremor and rigidity, which I've had in my left hand for awhile now -- I took it to another doctor. He played down the possibility that it was PD, and instead diagnosed it as essential tremor. I was relieved at first, but could not get out of my mind the fact that one of the main things that distinguishes essential from PD is resting tremor. Hence, I took it to another doctor, who agreed with the first doctor's assessment, while at the same time agreed with me that resting tremor was, indeed, suggestive of Parkinson's.
*long deep breath*
So I was referred to a nuerologist. He examined me and ruled out essential (because my tremors don't worsen with movement). He refused to diagnose me with anything. He does think that there are a couple "really mild" symptoms like the resting tremor that point to PD, but he said that even if it IS there's no point in medicating it yet, "as it is not that serious, and there are side-effects to treatment." I left with the feeling that I should have received more clarity from a specialist...but I suppose I shouldn't expect too much when there isn't any direct diagnostic test for PD.
Anyway, I had a blood test taken for Wilson's (which the specialist doesn't really suspect, but felt the need to rule out), and I will find out the result of that test tomorrow.
I'm trying to keep a positive attitude. But things are too unclear to me now, and the future is looming a bit. I'm 32 yrs old. The previous docs did not want to entertain the possibility that it could be PD because I'm young. But people have shown symptoms at earlier ages, thus, wouldn't PD be a possibility? And if it is, when ought they medicate it? It's already a hindrance to my typing, and a little embarassing when I walk and my left hand is trembling uncontrollably...I suppose the reason I'm ranting is that I would like answers when only questions are evident...
Thanks for letting me vent...
Sharkboy
Sponsor
Bruce
06-09-2003, 08:54 PM
Sharkboy, I can relate to your frustrating experiences with doctors. Pd id not uncommon at 32 years old, but with "one" symptom and your age makes diagnoaing pd very difficult.
What i have learned is even a neurologist may not have enough experience to diagnose you. Some doctors seem to have a mental block that someone like you could possbly have pd and are frequenly misdiagnosed.
I would strongly recommend that you contact the nearist teaching hospital and see a movement disorder specialist. A MDS is a apecialized neurologist. After goimg through four neurologists, i founf a MDS and am very glad i did.
Don't expect a quick diagnosis, because it might take a few appointments. He will test you for a variety of symptoms such as slow movement, poot balance, small handwritting, chronic fatigue, weakness, response to Sinemet, poor concentration. An experienced MDS will see these symptoms and many more if present.
Good luck, Bruce
What i have learned is even a neurologist may not have enough experience to diagnose you. Some doctors seem to have a mental block that someone like you could possbly have pd and are frequenly misdiagnosed.
I would strongly recommend that you contact the nearist teaching hospital and see a movement disorder specialist. A MDS is a apecialized neurologist. After goimg through four neurologists, i founf a MDS and am very glad i did.
Don't expect a quick diagnosis, because it might take a few appointments. He will test you for a variety of symptoms such as slow movement, poot balance, small handwritting, chronic fatigue, weakness, response to Sinemet, poor concentration. An experienced MDS will see these symptoms and many more if present.
Good luck, Bruce
Googy
06-09-2003, 11:41 PM
Hi Sharky,
Bruce gave you very good advice.A MDS is the way to go.
Hang in there,
Googy
Bruce gave you very good advice.A MDS is the way to go.
Hang in there,
Googy
Sharkboy
06-10-2003, 10:20 AM
'Lo, again.
This is an update. I saw the same neurologist today. It went well -- in that I came out a bit more encouraged than when I went in.
He still hasn't diagnosed me with anything. But that's essentially just a formality. As was recommended here, I'm going to see this Movement Disorder Specialist (one of the top Parkinson's docs in this part of the world), and he'll be able to give me a definitive diagnosis...but before I see him in July, I have to get an MRI scan to make sure the old noggin' is still functioning right...no one expects anything abnormal from the MRI, so once that's cleared up I should have a diagnosis of PD.
The good news came in a couple forms today. First, my neurologist said that the fact that I have a hand tremor as the predominant symptom (and I certainly do! My index finger is doing the hippy-hippy shakes over the keys as I type this) is a good thing, since tremor-presenting PD patients a) respond much better to meds than non-tremor patients and b) we tend to be able to better maintain a "normal" existence...in other words, I'm less likely to be completely crippled from this down the road. Second, he said that he suspects that I won't even need treatment for another couple of years, and by that time the standard treatments will be much more effective (and less side-effective) than they are now.
I believe him on that last point. At present there are a number of new treatments (such as a mechanism called a "brain-stimulator") which are novel now, but may be more available in two years time...let's hope.
This is an update. I saw the same neurologist today. It went well -- in that I came out a bit more encouraged than when I went in.
He still hasn't diagnosed me with anything. But that's essentially just a formality. As was recommended here, I'm going to see this Movement Disorder Specialist (one of the top Parkinson's docs in this part of the world), and he'll be able to give me a definitive diagnosis...but before I see him in July, I have to get an MRI scan to make sure the old noggin' is still functioning right...no one expects anything abnormal from the MRI, so once that's cleared up I should have a diagnosis of PD.
The good news came in a couple forms today. First, my neurologist said that the fact that I have a hand tremor as the predominant symptom (and I certainly do! My index finger is doing the hippy-hippy shakes over the keys as I type this) is a good thing, since tremor-presenting PD patients a) respond much better to meds than non-tremor patients and b) we tend to be able to better maintain a "normal" existence...in other words, I'm less likely to be completely crippled from this down the road. Second, he said that he suspects that I won't even need treatment for another couple of years, and by that time the standard treatments will be much more effective (and less side-effective) than they are now.
I believe him on that last point. At present there are a number of new treatments (such as a mechanism called a "brain-stimulator") which are novel now, but may be more available in two years time...let's hope.
Bruce
06-10-2003, 11:02 AM
Sharkboy, looks like you are on the right track. I have had two DBS sugeries. The first one missed the target, the second one was a success.
I never had tremors, but was starting to have dyskinesia, which is caused by taking too much Sinemet. I have researched the surgery for about four years, and tremors is the most correctable symptom.
Now, i have no dyskinesia and have reduced my meds by over 50%. It didn't help my balance, strength or stamina.
If you search for information about the surgery, keep in mind that people who had poor results are not likely to post their experience. You will see stories of dramatic improvement, but you never know for sure how it will affect you until you go through with it.
Most surgeons perform the surgery in two stages. After getting the electrodes implanted, i was dismissed the following day. After having the second stage (battery packs), i was dismissed just as soon as i woke up.
Bruce
I never had tremors, but was starting to have dyskinesia, which is caused by taking too much Sinemet. I have researched the surgery for about four years, and tremors is the most correctable symptom.
Now, i have no dyskinesia and have reduced my meds by over 50%. It didn't help my balance, strength or stamina.
If you search for information about the surgery, keep in mind that people who had poor results are not likely to post their experience. You will see stories of dramatic improvement, but you never know for sure how it will affect you until you go through with it.
Most surgeons perform the surgery in two stages. After getting the electrodes implanted, i was dismissed the following day. After having the second stage (battery packs), i was dismissed just as soon as i woke up.
Bruce