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Edward Sky

time to diagnose

6 posts in this topic

Hi,

I am very frustrated about the entire process. I still have not gotten a diagnosis from my doctor, which I think is likely Parkinson's. My concern is the longer it takes to give me a diagnosis, the worse my problem become because it is untreated. I feel like my issues are getting more severe, such as shaking from the inside of my body and other strange movements.

 

Can anyone tell me their story. Is this generally the course of Parkinson's that it take some time to diagnose? Thank you for sharing.

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Hi Eddie,

 

How long have you been waiting for a diagnosis? From what I understand, it is quite difficult to diagnose Parkinson's in the early stages. What are your symptoms?

 

I was just recently diagnosed a little over a month ago. My wife and I noticed my symptoms (tremor, no arm swing, fatigue...) last summer. I have more non-motor symptoms which have been around for almost 3 years now. Most of it was just marked off as getting older even though I'm not that old, early 50's. I'm taking Azilect now, which after 5 weeks, I'm finally starting to see some progress.

 

Are you seeing an MDS, Movement Disorder Specialist? If not, you should seek one out.

 

Dave

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My left hand would tremor from time to time, I didn't think anything about it. Then I fell down the stairs three time within about three months, something very unusual for me. One time it was very painful.

 

Now, my left thumb bounces all over the place (I notice it when I have my Iphone in my hand). It seems to get worse with stress. I seem to move slower, my balance is greatly reduced in 5 years, my sense of smell sucks and my entire arm shakes at times now. I get horrible bouts of fatigue at times.

 

However I am having issues that are not Parkinson's like. For one thing my right leg has a tremor, not my left and I don't have a problem with arm swing. Also I am in my early 40's.

 

I have been to three different neurologists now, and the second one mentioned possible Parkinson's, and the new one just ordered a new MRI and record review.

 

I am terribly frustrated, I have a family to worry about and I need to know if I should be on medication to slow it down.

 

Thanks.

Edited by eddie sky

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I am in the same position you are. Very frustrating. Docs won't commit to PD easily, because there is no test to back up their

findings. They will not dx unless they see 2 cardinal symptoms over a period of time. My tremor is internal in right leg, they

can't see it so no dx. for 4 years. One thing though, there is no medicene to date to slow down the progression.

 

I am on my way to a psyco therapist because of all the anxiety waiting for dx.

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hey guys it is very frustrating trying to figure out what is going on, I went for 8 years because the symptoms weren't visible or my age or ????? the truth is there is no one test like for diabetes or cancer or whatever, I just really started doing my homework, reading everything I could, not just for pd, we (my husband and I) started looking up symptoms, he has an old self diagnose med. book, and we thought that it could have been my parathyroid glands because your parathyroid glands if aren't working can cause the same almost exact same symptoms as early onset of pd. but then there are symptoms of pd. that aren't on the parathyroid list and I was having more of those symptoms and when we went to this new neurologist he spotted the problem right away, had me do a few more of his test, and then on second visit he said I am about 98% sure what this is but take this medication 25/100 levo/carbidopa. and the first dose WOW I had to check in with him every three days and let him know what is going on, and by third visit I found out for sure s guys I know that you are frustrated but hang in there and get second and third and fourth opinions, and this is a question my husband asked me, mind you I started spending every waking minute trying to find out what was wrong with me how could I be changing in so many things and the symptoms were getting worse and worse the more I stressed about finding the dx. the more my symptoms would act up, his question was this so they say you have it (Parkinson's) what would you change? are you going to sit around and feel sorry for yourself or are you going to keep going? Guys I am not judging or insinuating anything, for me having the dx, helped make since of what was going on, and when something is acting up I can say o ok, its cuz of pd, or wait that is not normal pd so lets call dr. so I think just keep pushing for your answer, but also don't stop living life. by the way many of us that are younger got the same thing You are to young for this disease, so they over look the possibilities, ignore that statement k best of luck.

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You are so right Sarahjo, and I will admit, I have stopped living my life. It is awful and wasteful, I just can't help it (as you

can see.)

 

Please, just tell me one thing (I know I am a crazy pest.)

 

Did your first motor symptoms increase little by little each year or come mostly all at once?

 

I have had no increase in motor symptoms 4 years, but tremor is definitely not essential or any other kind, it is resting, on one side, which I know is PD, but the (non) progression part is what is so confusing.

 

Sorry, to be such a pain......

 

Thanks in advance!

 

xx,

sheila

Edited by invisable

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