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Acceptance of PD diagnosis...a new path


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#21 afroney

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Posted 03 June 2014 - 05:44 AM

For 17 years I took increasing amounts of Sinemet (up to 20 tablets a day the last few years) and never suffered dyskinesias. Now, 18 months after DBS surgery and maybe 4 pills a day, still no dyskinesias.


Thats amazing!

#22 noah

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Posted 04 June 2014 - 05:22 PM

I am on the lowest dose of sinemet and have dyskinesia. Guess it us different for everyone. If I have the shakes on such a low dose I shutter to think about the time I will have to up my dose! I try not to think about it.

#23 MaryLouder

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Posted 05 June 2014 - 08:43 AM

My name is Mary, I am new to this, I have been lurking around reading all subjects I can for a couple of weeks now. I felt this was the right time for me to ask advice or help from all of you.

I guess I better say a little bit about myself. I am a 62 yr. old woman, married and have 37 grandchildren, 7 great grandchildren, 9 children and married to an Angel.

I have had many illnesses over yrs., Lupus, Hyperthyroidism ( Graves Disease ), Fibromyalgia, Polycythemia Vera, Vascular Disease ( 2 heart attacks, 4 TIA'S, 10 Cardiac Stents ), Macular Degeneration, Retinal Dystrophy, Cataracts, Stage 4 CKD ( awaiting to start Dialysis soon ), Spinal Stenosis, and Gout and RLS.

I feel my symptoms started almost 10 yrs. ago, every time I went to Dr., they would say " oh, your Lupus is Flaring up, or Your Fibromyalgia is acting up".running to the E.R. doesn't help, they don't do much. Morphine and some tests but never find anything.

I had told my PCP about 6 yrs. ago I felt strange because all of a sudden my head would start shaking or my hands, again fibromyalgia or Lupus. I was having severe pain in arms, shoulders and neck. They sent me to a Pain Management Dr., went through 2 yrs. of Epideral injections, morphine and finally had the nerves in spine Caterized. Then I quit seeing him !  I kept telling him none of that was working and more symptoms were coming.

Finally about a month ago I went back to my PCP and told him tremors on hands were getting worse and I had started stuttering, I was going sideways, hitting the walls when walking, lost partial sense of smell, then my shoulders and hands started hurting real bad, to the point to that some of fingers would freeze and I couldn't move them. PCP sent me to Neurologist at thid point. So I went to see him a month ago, he had me walk, speak and talk and when he was done told me I definately had PD. Since I was taking Ropinerole for something else told me to keep taking it for this.

Went to see him second time and let us know he was no longer with our Medical Group so now I have found another Neuro and it will be 2 wks before I see him. I do not sleep but a couple of hrs. a night, I am always in pain, now I have noticed I drag my rt. leg when walking.I have periods while talking to someone I forget what is being said or what I have said. My feet are swollen, having trouble cooking or doing minial housework.

I hope you can shed some light on this for me and maybe I can work on it harder. I believe the good Lord must think I am pretty special to have given me so much to bare. I Thank God everyday I am Alive. Thank you all in advance for any insight.                      Mary



#24 Rogerstar1

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Posted 05 June 2014 - 08:58 AM

Generally, suspicion of Parkinsons Disease is confirmed by an L-dopa challenge.  The patient is administered Sinemet (L-dopa) to see whether any of the standard PD symptoms are lessened or eliminated. This should be done under a doctor's care, of course and I would press at your new neuro's appointment to undergo the procedure.  Some or most of your symptoms might be PD related and those that are can be helped considerably by the right amount of Sinemet taken orally.  All the best to you, M'am.



#25 Rogerstar1

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Posted 05 June 2014 - 09:04 AM

I am on the lowest dose of sinemet and have dyskinesia. Guess it us different for everyone. If I have the shakes on such a low dose I shutter to think about the time I will have to up my dose! I try not to think about it.

 

I get the 'shakes' occasionally by which I mean tremors on one side.  By dyskinesia, I  refer to the flailing about of the entire torso as demonstrated by Michael J. Fox.  For me some of that would only appear if I vastly overimbied my Sinemet dosage...something I am careful not to do.  These days I take 25/100 pills by the half pill on an as needed basis.


Edited by Rogerstar1, 05 June 2014 - 02:44 PM.


#26 MaryLouder

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Posted 05 June 2014 - 11:01 PM

Thank you so much for your reply and I will speak to the new Dr. as soon as I see him. Forgot to say I am 62 yrs. old now and my younger brother, an uncle and my mother also had PD. My mother passed away 10 yrs. ago of Pancreatic cancer but was diagnosed with PD 2 yrs. before. Her brother had it for about 15 yrs. before he passed and my brother has had it for 10 yrs. he is now 60 yrs. old. His health is alright except for the tremors and stuttering, he does complain of pain in certain areas.           Thank you again for replying so soon Rogerstar1       :::::::::::::::::::: Mary



#27 Annikin

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Posted 06 June 2014 - 09:18 AM

Mary- Welcome. You might want to get involved in one of the studies that looks at PD in families- there are a few other folk son the forum like you who have multiple relatives w/PD- you re of great interest to researchers. Take at look at the Fox Trial Finers at MJFF. 






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