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BillBRNC

Help With A Symptom

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I got LBD that also produces a lot of Parkinson symptoms, for me almost all of them. Sinemet reduced these symptoms at least 90% at the maintenance dosage. A few months back, I had to reduce the dosage of Sinemet by 50% in order to help with a low BP problems I have from autonomic dysfunction from LBD. After maybe a week, I noticed that the Sinemet then only was reducing my original symptoms by about maybe 60% or so. In other words, I had stiffness, some cramping, some joint discomfort and the like, but mostly when the prior dose was starting to wear thin. Along about 2 to 3 weeks after reducing the dose, I started having trouble all the time with my right elbow. My doctor said probably bursitis, so I wore a compress sleeve on the arm arround the elbow for a few week. Over time, the elbow problem seems to have gotten worse, and the problem has expanded to include my right shoulder and my left shoulder and elbow, and to lesser extent as of today with my wrists. They all seem to have the same basic feeling, only different levels of intensity. I also have somewhat stiff neck and back of shoulders and mid back. My question is this: Does all this seem more like Parkinson stuff than bursitis or something else. It just occurred today to me that all this started a few weeks after I reduced the Sinemet, but it didn't become noticable and bothersome for a few more weeks, then expandedd over the last several weeks again. Before I run off half cocked on this with doctors, I just wondered if these symptoms ring a bell for any of you. Please let me know. Thanks.

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Hey Bill,

i really hope you get the answer to this question so you can share it with the rest of us. 

Im having shoulder pain that comes and goes as well as stiffness in my hamstrings and legs. I think I’m probably under medicated. 

However I can tell you from my past experiences with several rotator cuff tears and bursitis in my acromion, this is a different type of pain and Also different in intensity. 

My current shoulder joint pain is not responsive to opiates, but in the past it was when I had torn it. This current shoulder pain is partially sensitive to baclofen muscle relaxer, which I’m taking for dystonia in my right hand. In the past, the shoulder pain was a constant throbbing pain and I couldn’t sleep or raise my hand. 

The current pain is inconsistent and is having less impact on mobility. 

My guess would be that what you have going on is not related totally to bursitis only but could be some wear and tear combined with PD  

but im no expert  

I hope this helps. 

-S

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S, thanks. Right after I posted this, I remembered that I had some spare fast acting Sinemet. I think 25/100. So took one to see what happened. It seems to have reduce significantly the discomfort in my shoulders and left arm and wrists, but no impact on my right elbow. My short term memory has been gone for a long time now, and I also realized again that I really can't remember how everything felt right before I took the 25/100. But there is no doubt that those parts of my body don't feel as messed up as before, but I can't tell if my right elbow has improved any or not, I just know it still hurts. So maybe what you said is it. Some but not all is Parkinson, but the elbow might just be bursitis. I never had bursitis before that I can recall, and I am 68 years old. Well I  ask the neuro the next time I see him. Thanks again. Bill.

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Oh, and my neuro told me that I should feel free to pop a 25/100 fast acting any time I feel the Parkinson stuff get worse, unless it is right close to my next normal dose. You see, my Parkinson problems don't seem to be nearly as painful and disabling as the folks who have true Parkinson's Disease, as opposed to my Parkinson stuff that is an add-on to my LBD. You guys seem to have a so much more physical problems than I do. Good luck. Bill.

 

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I was diagnosed after all the testing and such, along with a Pet Scan, about 2 years ago. But I was diagnosed with dementia a year prior, but the doctor didn't know what type, only that he didn't think it was Alzheimers. At that time, I had not started having Parkinson symptoms. I had the same symptoms at had at time of diagnosis for at least a year maybe 2 prior to getting diagnosed with dementia. So I think I've had sufficient symptoms and findings to diagnose LBD at least 4 years ago, but clearly 3 years ago.

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Hi Bill

what has progressed the most since you were diagnosed lbd ?One thing about lbd is sinemet is hardly used except in small doses..Your cognitive skills seem pretty good with your writing.Even with me I have to go over what I write a few times to check for errors.lol

Have a pleasant weekend

john

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