What to expect?
Posted 03 August 2013 - 07:56 PM
Posted 03 August 2013 - 08:14 PM
Would you mind my asking what you very first symptoms were in those first 4 years?
Thanks, I hope others can help with your questions.
Posted 03 August 2013 - 08:27 PM
Posted 03 August 2013 - 09:42 PM
So, you had all of those motor symptoms (other than the constipation)in the course of 4 years?
If you don't mind my asking where is your internal tremor? Was this your first symptom?
That is what I have had for 4 years with no change or additional motor symptoms.
Posted 04 August 2013 - 06:26 AM
Posted 04 August 2013 - 11:58 AM
I would be inclined to believe that if it wasn't on one side and at rest!!
That's the part that hangs me up and keeps shouting PD to me!
Edited by invisable, 04 August 2013 - 11:59 AM.
Posted 04 August 2013 - 12:00 PM
Bottom line...we may have similarities but we may also be quite different from each other and still have PD. WE should be careful not to assume that if someone else doesn't follow our own unique pattern of developing symptoms that they don't have PD. My own symptoms during the first years after diagnosis were very slow to develop. I can understand invisable's remarks entirely and hope she/he will continue to see her MDS for diagnosing and care.
Posted 04 August 2013 - 06:32 PM
Oh goody, I get to agonize for many, many years now........oh joy, just what I need in back of my already obsessed mind!
Maybe we should start a pool on if I have PD or not (just kidding!)
Posted 04 August 2013 - 07:13 PM
Posted 04 August 2013 - 09:48 PM
I think what Woodbee was trying to say was that PD is very unique to each patient, so it is really difficult for anyone to say with any accuracy exactly how your PD will progress and at what rate. However, with that being said, in my research over the past year I have found some articles that suggest that roughly 50% of PD patients become disabled within 5 years of symptom onset, with that figure rising to around 80% at 10 years after symptom onset. Again, these are just rough estimates that vary depending on a wide range of fairly unpredictable factors. I am at the 5-year mark and am still working, but based on my current progression I have serious doubts that I'll make it past the 10 year mark without going on disability. This also doesn't directly answer your question about independence and functioning, which could continue for many, many years beyond which one could no longer work, but it's about the only thing I could find any actual numbers on. Hope this helps.
Currently age 42. Symptomatic at age 36. Diagnosed at age 39. Sinemet 25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime
Posted 05 August 2013 - 08:25 AM
Posted 05 August 2013 - 08:45 AM
My father had PD and he always said exercise helped him the most.
There are many promising treatments close now so I wouldn't worry.
the future and the past is outerenviroment which we can't control.Only the present is in our hands
Summer is slipping away but we did get rid of the awful drough.
Im starting a Parkinson Cafe this fall in our area.meeting others like ourselves helps all.
Posted 05 August 2013 - 12:36 PM
I love the idea of a PD cafe, there is nothing like being together with those that understand, nothing like it!
If you don't mind my asking where in NYS is this going to be. I live in NYS also........Western NY.
Posted 05 August 2013 - 09:10 PM
Posted 05 August 2013 - 09:42 PM
Posted 06 August 2013 - 05:55 AM
Some Strong doctors like to scan.It makes alot of money but tells you little.Maybe we can talk more.My VA helped me more but if I couldnt get into seeing dr. Burback or dr. marshall.
Posted 06 August 2013 - 11:54 AM
I had a feeling they were going to push for the Dat (SPECT) SCAN, which I may just go for given my unusual presentation and 4 years with no progression.
Thank you for the heads up!
Posted 02 September 2013 - 10:25 AM
Posted 02 September 2013 - 08:39 PM
I haven't been officially diagnosed with PD yet. But I am having every possible symptom on the books and then some. Maybe if there is a super PD, I would be a good candidate to have it.
Posted 03 September 2013 - 03:43 AM
"The symptoms of brain tumors depend on their size, type, and location.
The most common symptoms of brain tumors include headaches; numbness or tingling in the arms or legs; seizures, memory problems; mood and personality changes; balance and walking problems; nausea and vomiting; changes in speech, vision, or hearing".
Well, I have most of these symptoms. Headaches? Sometimes. Numbness. A little. Memory issues. Yes, I guess so. I keep forgetting things. Mood and personality changes. Oh, yeah. Balance and walking problems. Yeah, definitely THAT. Nausea. Yeah, definitely that too. Changes in vision, speech or hearing? Yeah, my vision gets blurry and I have some difficulty with speech when I am tired. Seizures? No. 7 out of 8. So, what's the verdict here? Do I have a brain tumor? No.
Strangely, a patient may have ALL the symptoms of a disease and not the disease itself. That's why a diagnosis is never based solely on patient's symptoms (which are better evaluated only by a physician and not by the patient himself), but also on imaging and laboratory tests. The diagnosis process is much more complex than it seems.
-English is not my first language !
-Aged 39. Diagnosed at 35.
-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).
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