mquest
09-23-2006, 10:34 AM
Is there a benefit for early diagnosis? Everything I read sounds like there's so little they know about the disease, I don't know if there's a way to diagnosis early on.
What would be the best test to diagnose Parkinson's or any other movement disorder, particularly early on?
My only symptoms are difficulty with balance and a tremor in my left hand. I would describe it as a spasm or quiver in the soft tissue between my thumb and index finger. There's no pain, but it makes my finger or thumb jerk or both jerk at the same time. I've nearly dropped a few things. Now that I don't have full control, I'm concerned.
The reason I'm asking here first (before I see my doctor) is that I want to know what are the right questions to ask. What symptoms would I need to have before my doctor would order tests or refer me to a neurologist?
I've been to 10 different doctors over the years. I keep changing because none of them will take me seriously. They must think I'm a hypochondriac. I won't go into the problems that I've had, but any pain, lump, swelling or other symptoms I have to wait for it to go away on it's own. I get the same answer every time I ask the doctor to do tests. "Your young (37) have healthy weight, blood pressure, cholesterol. You quit smoking, don't have a family history of heart disease, cancer or diabetes. You're healthy, don't worry, it will go away". So I want to go to the doctor prepared this time. It's very depressing and stressful every time I take time off of work, go see the doctor and get blown off and have to change doctors again.
Thanks in advance. I'll keep reading and learning from others experience
What would be the best test to diagnose Parkinson's or any other movement disorder, particularly early on?
My only symptoms are difficulty with balance and a tremor in my left hand. I would describe it as a spasm or quiver in the soft tissue between my thumb and index finger. There's no pain, but it makes my finger or thumb jerk or both jerk at the same time. I've nearly dropped a few things. Now that I don't have full control, I'm concerned.
The reason I'm asking here first (before I see my doctor) is that I want to know what are the right questions to ask. What symptoms would I need to have before my doctor would order tests or refer me to a neurologist?
I've been to 10 different doctors over the years. I keep changing because none of them will take me seriously. They must think I'm a hypochondriac. I won't go into the problems that I've had, but any pain, lump, swelling or other symptoms I have to wait for it to go away on it's own. I get the same answer every time I ask the doctor to do tests. "Your young (37) have healthy weight, blood pressure, cholesterol. You quit smoking, don't have a family history of heart disease, cancer or diabetes. You're healthy, don't worry, it will go away". So I want to go to the doctor prepared this time. It's very depressing and stressful every time I take time off of work, go see the doctor and get blown off and have to change doctors again.
Thanks in advance. I'll keep reading and learning from others experience
Sponsor
Caregiver 2000
09-23-2006, 07:06 PM
Its always good to KNOW as soon as possible. The less u worry the better you are off. My husband has cramps all over his body and tremor. It took a year to diagnose him. We were told early on a doc thought he had PD but at 27 years old that doctor was not sure enough to make that diagnoses. My hubby just went to reg. doc, explain the symptoms and they referred him right to a movement specialist! The down fall of getting on meds so early on is they will lose there effect on your body and then your just stuck. If u can hold off on meds you should as long as possible! If your symptoms are intrupting your normal routine then get on meds.
My husband was diagnosed @ 28 but symptoms showed @ 27. They have no one test for PD.......they illiminate other things to help diagnose. They did every test under the sun and ultimately it was him just him walking down the hall for a specialist to diagnose him a year later. Also, the cadilac med (Sinement) was tried on hubby and he showed improvement. Having Young Onset Parkinson's is NO benefit. Younger on patients seem to progress a lot lot faster!!!!!!! My husband was diagnosed @ 28, had deep brain stimulation @ 32 years of age and was put on full term disability at 33 and has now lost movement in his right hand/arm. His right leg has difficulty lifting and he falls a lot. He is only 34 now. He is not sleeping well at night and losing weight again. Which means that the Deep Brain Stimulation is wearing off. If we were to shut down his pace makers, he would be bed ridden!!!!! I wish to GOD I could show the world what Parkinsons has done to my husband. To open there eyes. It's like they think its a cake walk. No big deal. My husband has 2 boys. 16 and 7. Believe me in his shoes, his age and his life.....its a very big deal! Good luck to you and God Bless
Gabrielle
My husband was diagnosed @ 28 but symptoms showed @ 27. They have no one test for PD.......they illiminate other things to help diagnose. They did every test under the sun and ultimately it was him just him walking down the hall for a specialist to diagnose him a year later. Also, the cadilac med (Sinement) was tried on hubby and he showed improvement. Having Young Onset Parkinson's is NO benefit. Younger on patients seem to progress a lot lot faster!!!!!!! My husband was diagnosed @ 28, had deep brain stimulation @ 32 years of age and was put on full term disability at 33 and has now lost movement in his right hand/arm. His right leg has difficulty lifting and he falls a lot. He is only 34 now. He is not sleeping well at night and losing weight again. Which means that the Deep Brain Stimulation is wearing off. If we were to shut down his pace makers, he would be bed ridden!!!!! I wish to GOD I could show the world what Parkinsons has done to my husband. To open there eyes. It's like they think its a cake walk. No big deal. My husband has 2 boys. 16 and 7. Believe me in his shoes, his age and his life.....its a very big deal! Good luck to you and God Bless
Gabrielle
kathyIS54
11-06-2006, 10:09 PM
<< He is not sleeping well at night>>
My hubby who has had PD since 1991, was just last month put on a mild non addictive sleeping pill. Our specialist feels sleep is very important, more so then napping. It has helped greatly.
As for putting of the meds with an early Diagnose, I agree with trying to cope til you feel you have to go on meds.
In the early days Hubby did'nt take anything, then he was put on mild doses, then he quit for 3 years, then had to give in and go on Sinemet. He is now 15 years into "knowing" he has PD and is now on Sinemet, bromocriptime, comtan, he is taking a total of 24 pills aday plus the sleeping pill. Just when you think you have a good regime, the darn PD changes:mad:
I'm very new to this site, but look forward to exchanging info and learning how others are coping, as caregivers and PD persons.
Cheers Kathy
My hubby who has had PD since 1991, was just last month put on a mild non addictive sleeping pill. Our specialist feels sleep is very important, more so then napping. It has helped greatly.
As for putting of the meds with an early Diagnose, I agree with trying to cope til you feel you have to go on meds.
In the early days Hubby did'nt take anything, then he was put on mild doses, then he quit for 3 years, then had to give in and go on Sinemet. He is now 15 years into "knowing" he has PD and is now on Sinemet, bromocriptime, comtan, he is taking a total of 24 pills aday plus the sleeping pill. Just when you think you have a good regime, the darn PD changes:mad:
I'm very new to this site, but look forward to exchanging info and learning how others are coping, as caregivers and PD persons.
Cheers Kathy
ToBeFreeToRoam
11-07-2006, 01:23 AM
Hi Kathy,
My dad (79) has parkinsons and alzheimers. He has been taking sinemet for several years. I think it is helping. He takes little shuffle steps and looks at the ground and does not swing his arms.
His only has some tremors. His neurologist will not give him any more meds until he tremors constantly. My dad sleeps good all the time, probably because of the alzheimers too. How old is your husband?
Let me know how your husband and the others on this forum progress and their ages. Yours has had it more than 10 years - and my dad has only been diagnosed for less than 4 yrs. I do think that my dad has stayed basically the same as when he was diagnosed. Probably, not, since I am around him a lot, 1 - 2 x week.
Take care,
Wannabe
My dad (79) has parkinsons and alzheimers. He has been taking sinemet for several years. I think it is helping. He takes little shuffle steps and looks at the ground and does not swing his arms.
His only has some tremors. His neurologist will not give him any more meds until he tremors constantly. My dad sleeps good all the time, probably because of the alzheimers too. How old is your husband?
Let me know how your husband and the others on this forum progress and their ages. Yours has had it more than 10 years - and my dad has only been diagnosed for less than 4 yrs. I do think that my dad has stayed basically the same as when he was diagnosed. Probably, not, since I am around him a lot, 1 - 2 x week.
Take care,
Wannabe
kathyIS54
11-08-2006, 08:40 PM
Hello
My husband is 65, even with his pd he is a very young 65, when he is on a good roll, he is very active and works like a 25 year old on our home and property.
little shuffle steps and looks at the ground and does not swing his arms.
Hubby just started shuffling this past year, it happens when the meds wear off, or some mornings his legs are like cement even when the meds are working.
As for the swinging of the arms, I remember when he was first diagnosed, that was a trait he had and the Dr told him/me that it was important to try to remember to swiing his arms well on our walks.
Also wanted to say his very first sign that something was wrong, was after a big snowfall one year, he had shoveled a fair bit, when he came into the house he had a twitch in his arm. After a week or so he went to the DR's no answers. Time went by and it got worse, returned to the Dr's only to wait 3 months to see a Spec. At that time our Regular Dr was away and the replacement Dr's. Exact words were " At least it is nothing like Parkinsons or anything like that"
Once we finally got to see the Spec, he casually said, after a few simple movement tests, "It's clearly early onset of PD" He handed us a few phamlets and left the room! We were in shock, neither of us knew what the heck it was! We went straight to a book store and looked it up, both of us were devastated!
So here we are 16 years later, still trying to figure out this nasty thing. In his first 10 years not too much changed, the change has been more rapid in the last 3 years.
We have a great Spec ( not the first one of course), and we now realize we can't do it on our own, we need to be in touch with him often now, 2x's a year, not 5 years or so like before.
Just as an interesting foot note Micheal J Fox and Hubby are from the same hometown. He is a outstandingly brave young man.
Cheers Kathy
My husband is 65, even with his pd he is a very young 65, when he is on a good roll, he is very active and works like a 25 year old on our home and property.
little shuffle steps and looks at the ground and does not swing his arms.
Hubby just started shuffling this past year, it happens when the meds wear off, or some mornings his legs are like cement even when the meds are working.
As for the swinging of the arms, I remember when he was first diagnosed, that was a trait he had and the Dr told him/me that it was important to try to remember to swiing his arms well on our walks.
Also wanted to say his very first sign that something was wrong, was after a big snowfall one year, he had shoveled a fair bit, when he came into the house he had a twitch in his arm. After a week or so he went to the DR's no answers. Time went by and it got worse, returned to the Dr's only to wait 3 months to see a Spec. At that time our Regular Dr was away and the replacement Dr's. Exact words were " At least it is nothing like Parkinsons or anything like that"
Once we finally got to see the Spec, he casually said, after a few simple movement tests, "It's clearly early onset of PD" He handed us a few phamlets and left the room! We were in shock, neither of us knew what the heck it was! We went straight to a book store and looked it up, both of us were devastated!
So here we are 16 years later, still trying to figure out this nasty thing. In his first 10 years not too much changed, the change has been more rapid in the last 3 years.
We have a great Spec ( not the first one of course), and we now realize we can't do it on our own, we need to be in touch with him often now, 2x's a year, not 5 years or so like before.
Just as an interesting foot note Micheal J Fox and Hubby are from the same hometown. He is a outstandingly brave young man.
Cheers Kathy
blessedw/yungpd
12-08-2006, 12:55 AM
take it from me i started with trhe same systoms .. don;t go to any doctor go to a doctor who specializes iin pd .. and if u can keep your stress down eat right and rest.. This will help wish I had.. Im 41 with sever pd.. god bless you