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Parkinson's Disease
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Posted 3/15/2011 12:33 AM (GMT 0)

I am new to this board. Am wondering if anyone has had presenting symptoms of eyelid twitching. I have been having this for more than 2 weeks. My mother and her cousin had PD. My first cousin has Parkinson's plus syndrome. Needless to say I am concerned about it showing up one day for me. Am going to my eye dr. tomorrow and have an appt. with opthomologist next week. Am wondering if I should see a neuro.

I do not seem to have other symptoms at present.

As you all know anxiety created by all of this is not pleasant.

Thanks for any input.

Posted 3/15/2011 1:02 AM (GMT 0)
suzita
The eye twitch is something new. The earliest symptom of PD is loss of smell. How is yours.
Posted 3/15/2011 1:17 AM (GMT 0)
I still have my sense of smell. From my reading it seems the eye twitching is a result of the medications for PD. I had a period of dizziness about a year ago and finally went to a neuro whom did not observe symptoms of PD at that time. I do understand though that early symptoms are hard to diagnose. That neuro thought my chances of getting the disease were less because of the 3 I mentioned above. Not sure about that line of reasoning but would like to believe it.
I appreciate your quick reply. Are there many on this forum who have a gentic link to PD?
Posted 3/15/2011 1:39 AM (GMT 0)
As far as I know nobody in my entire family has PD. I am 66 YO. I lost my sense of smell more than 30 years before the PD started. Read my post to semperfi.....

Dan
Posted 3/15/2011 1:43 AM (GMT 0)
suzita
Just interested...how old are you? What meds are your mom and her cousin taking? How long?

Dan
Posted 3/15/2011 2:17 AM (GMT 0)

I am 65. My mom has passed on but was on sinnemet for some years. She was given some other drugs as well that did not seem to be particularly effective. She was not dx until she was in her early 80's. I am not sure what her early signs were. Probably she didn't recognize them for what they were. Information is more readily available to us today with the internet. Not sure if that is good or bad!!

 My cousin is 78. They have revised the diagnosis several times and now say that he has Parkinson's Plus syndrome specifically Supra Nuclear Palsy. He became aware of difficulty around 72. Diagnosis was changed I believe after he did not respond to typical Parkinson's drugs.

AS far as I know my mother's cousin had typical PD. As you can see I could have some scary genes! Have been blessed with good health so far so am thankful for that. I do not dwell on the possibility but ofcourse when something that might indicate a neurological problem surfaces I can't help but wonder about it.

How long have you been dx with PD?

Posted 3/15/2011 2:23 AM (GMT 0)
Just read your post. Interesting that you lost sense of smell so many years prior and it took years for the balance problems to appear. You have been through a lot. I hope you are able to keep a positive attitude and am sure it is easier some days than others.

I trust you are retired? Are you still able to be active to some degree?

Will see what the eye doc has to say tomorrow even though he is not an opthomologist. Have been having headaches right behind eyes also which I attributed to sinus.

 

Posted 3/15/2011 2:43 AM (GMT 0)
suzita
Yes I am retired. I was dx September 08 by a general neurologist. He prescribed sinemet. Better, but still had tremors in right hand. Added artane. Occasional tremors. Asked about a new drug, Azilect. He said it is too expensive and he does not prescribe it!!!!!!!!! Found out that movement disorder specialist neurologists specialize in PD type disorders. Found one. He agreed that sinemet is not the drug to start with. Too many sde effects. Started Azilect. Have basically no symptoms. Oh, I cannot write my name legibly. You cannot tell that I have PD. No bad days. I am in Florida right now. Driving back to Michigan Wednesday. No problem. If you start with a neurologist, be sure he/she is a movement disorder specialist. By the way, retail price of Azilect is about $9.50 each.....one a day. I'm worth it.

Dan
Posted 3/15/2011 3:00 AM (GMT 0)
I think that may be a relatively newer drug. You are right...expensive but if you are doing well on it it is definitely worth it. Glad to hear you are able to enjoy life, Where did you spend time in Florida?
Nice that you may have missed the ice and snow up here. In Ohio we had plenty but it is looking like spring now.

It is good you have a movement disorder specialist as I do know they are the ones to see if you are dealing with PD. We have a center here at OSU which has several good ones. My mother had one who has now retired but he was excellent.
Have a safe trip back to Michigan.
Posted 3/15/2011 3:10 AM (GMT 0)
We've been in Cocoa Beach since the end of January. It's on the ocean side. I'm ready to be home in Gladwin. Gladwin is dead center in the lower peninsula. We're on a lake. Really can't wait to get home.

Dan
Posted 4/4/2011 7:36 PM (GMT 0)
Interestingly, I have had a small EYE flutter in the last year or so since I have been diagnosed with PD. It only lasts a moment and then goes away
Posted 4/4/2011 7:39 PM (GMT 0)
I'm new to this forum also. I'm happy with my doctor but he mainly Medicaid's me. What can a movement specialist do for me?
Posted 4/5/2011 12:36 AM (GMT 0)
a movement specialist is a neurologist that specializes in movement disoorders such as pd.Sort of like hiring a mechanic that specializes in your type pf car instead of a general mechanic.If you had a prize bmw would you want the corner garage mechanic to tinker with it?These guys become md"s then go on to specialize as neurologists then specialzie in movement disorders.This increases checks and balances along the way .Increases knowledge along the way for the MD,and has them keeping up to date in a very specialized field .This is all to your benefit.I was originally dx by a general practioner who said I believe you have pd,referred to a neurologist who said it appears that you have pd,and referred to a movement disorder specialist ,who after much testing confirmed that I have pd.I don't know how many neurological disorders there are but I'll bet it is a substancial number.I want the Doc that is concentrating on my neurological problem.Wish you thebest. Ed, and welcome to Healing Well.
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