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Sudden Progression?


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#1 RNwithPD

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Posted 14 September 2013 - 07:39 PM

Starting August 1, and with my MDS's approval, I titrated my Sinemet up from 1 tablet every four hours to 1-1/2 tablets every four hours. I felt much better on this dose with the exception of the ongoing fatigue that I've been experiencing. All was going well until 10 days ago when I had an especially stressful 16-hour shift. That afternoon I felt my right shoulder, arm, and neck starting to tighten up and hurt like it normally does when my dose is wearing off, but this happened around 2-1/2 hours after my last dose. Since that day, I've been in pretty significant pain in that shoulder and arm. I couldn't get in to see my neurologist this week, so I went to a walk-in clinic and they prescribed some Flexeril and Norco 5 which helps, but doesn't completely relieve the pain. I also heard back from my MDS two days ago, and she said to go ahead and up my Sinemet to 2 tablets every 4 hours to see if it helps, and then go back to the 1-1/2 tablet dose. The 2 tablet dose surprisingly seems to have relieved my fatigue, but not my pain. So, is it possible that my PD progressed suddenly from a single highly-stressful day? Has anyone else experienced this?

Thanks,

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 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


#2 sarahjo

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Posted 14 September 2013 - 11:57 PM

kevin I to just had meds upped, I thought it was just due to the stress of taking daughter to college and all but two weeks went by and dr. called me back and said to up meds to 1 and 1/2 pills every five hours, also been having lots of pain, my frustration is not due to the medication and the progression, its how can the pd go from doing good to boom, and then change. I too would like to know if this kind of situation change that quick.



#3 Brad24

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Posted 15 September 2013 - 05:33 AM

Kevin not to get your hopes up but I thought the same thing while have the same type shoulder issue as you described. My MDS reccommended is see the orthopedic surgeon first since i do a lot out working out. I went to see the Orthopedic surgeon and discovered I have bone spurs and a slight rotator cuff tear from working out. It still sucks but better than a sign of PD progression. Is there anyway you could have hurt it? I know as a registered nurse you guys can get real busy and do a lot of lifting ( my wife was an ER RN for 12 years) Good luck let me know how you make out.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#4 sarahjo

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Posted 15 September 2013 - 11:52 AM

Brad is right, my pain yes is from muscle cramps(spasms, why do they call muscle cramps spasms?) any how, before being diagnosed I had cervical fusion in 2002, and the a nerve removed from my right foot, and then my right shoulder had some bone spurs removed, and then the left shoulder, and just recently went to primary to get an authorization for mri on lower back,(I feel as if its not one thing its another) any how they did find a herniated disc in L2-3 and some arthritis along the spine and bone spurs, the reason I am sharing this is when neuro called to up meds, I was sharing the dx, of the mri, and he said to send it down to him, cuz for normal ppl, this herniated disc may not cause problems but for ppl with pd,ms, etc. it could cause more stress on body in which cause symptoms to increase. so I will be doing that Tuesday, (its amazing the neuro dr. that I am seeing works directly with the neuro surgeons that did my cervical fusion) so I don't know if this helps explain the pain issues kevin, but I am still trying to learn as much as I can about what is going on. Best of luck...



#5 Daven

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Posted 15 September 2013 - 01:44 PM

Kevin, you may want to go see an orthopedic surgeon.  I started out this year with some minor aches in my shoulder, to pain, to pt, and finally a completely torn rotator cuff.  I'm planning on having surgery in December if I can withstand the discomfort.  Go get it checked out. 

 

Dave



#6 RNwithPD

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Posted 15 September 2013 - 05:52 PM

It's always possible that it's an injury with as much lifting as I do, but I find it odd that it's the exact same pain I feel when my meds wear off only ten times worse. I think I'm going to try to get in to see my doctor tomorrow. I'm tired of trying to work with all of this pain.

Thanks for all of your responses.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 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


#7 Prospector

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Posted 15 September 2013 - 10:21 PM

Hope you feel better ASAP
Dx Nov 2012 at 40

Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day

#8 coacht

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Posted 16 September 2013 - 07:33 AM

Kevin,
My wife originally had dystonia in her shoulder. Try doing some stretching and flexion exercises. This really helped her. If that doesn't do it, definitely see the orthopedist.

#9 Golden01

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Posted 16 September 2013 - 08:08 PM

Hope the doctor had some answers for you that will bring relief. 



#10 RNwithPD

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Posted 16 September 2013 - 08:25 PM

Thank you everyone for words of encouragement and concern. I've been taking the Flexeril and Norco that I got at the walk-in clinic each night after work, and wearing a Thermacare patch each morning at work for the past two days and I'm feeling a lot better. I've also went up to 2-tablets of Sinemet every four hours. I still feel some pain, but it's much more tolerable now. I'm off work tomorrow, but I kind of hate paying for another doctor's visit for something that seems to be getting better. I'm just not sure why I'm feeling better - time for an injury to heal, or a higher dosage of Sinemet. Either way, it's getting better and I'm glad.

Thanks,

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 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


#11 RNwithPD

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Posted 18 September 2013 - 06:21 PM

Well, my PCP says that I most likely have a pinched nerve in my neck. He prescribed some steroids for the next few days to take down inflammation, and then some physical therapy to work it out. I'm also considering going to see a chiropractor. Anyways, thanks for all of the input.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 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


#12 Brad24

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Posted 21 September 2013 - 09:57 PM

Hope your feeling better soon man. Remember to do your PT.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#13 reverett123

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Posted 22 September 2013 - 09:54 AM

You might want to think about the spacing on your sinemet as well. At the basic level, a sinemet 10/100 tablet has a curve or graph of one hour (approx) climbing to a functioning plateau for a second hour followed by two hours decline back to baseline. That is idealized, of course, but is, at least for me, surprisingly predictable. The goal, of course, is to stay on that plateau as much as possible and so we add things such as agonists and protein restriction and whatever to see what works for us.

 

I do well with a combo of one 10/100 plus a 50/200 CR sinemet every two hours and have for about three years now. I know that is a lot of sinemet but, after 21 years of symptoms and 14 years of medication I am functional most of the day and avoid the perils that come with polypharmacy. The simple two-hour spacing allows me to track things in my head and I seldom miss a dose.

 

There is some debate about the spacing question. It comes down to what is more a problem, the amount of Ldopa consumed or the stress of riding the graph up and down as we try to make it through the day. Four hours is a long time when the pill has only a two-hour plateau. The ramp up to it and the one down from it are high stress periods, both physical and emotional, and our backs often bear the brunt and problems that might have healed instead add to our burden. Graphing like this works well but quickly becomes too complex as additional medications are added. Unforunately, the easy thing for our docs is to add drugs on gut instinct in hopes of finding a workable combination and many patients can't manage this on their own but, if you can, it is worth it IMHO.



#14 RNwithPD

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Posted 22 September 2013 - 09:23 PM

I've got 48 hours left on the steroids and, while the pain has definitely diminished, it's still there but has changed somewhat. It's now hurting more around the front of my shoulder and down my bicep. The only thing that I can figure is that the Prednisone has reduced the inflammation enough to reduce the pain, but the nerve is still pinched and affecting the branches downstream of the pinch point. I'm seriously considering heading to the chiropractor next. I'm also fairly certain now that it's not really responsive to the Sinemet.

Again, thanks for everyone's input and help.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 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


#15 sarahjo

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Posted 25 September 2013 - 01:18 PM

I hope you get your answer soon look at my writing I hit something on the key board on accident and now I have creative writing. Lol, any how kevin I am praying for you. have friends on tri care and he has prostate cancer, and they are playing around also, best of luck and prayers for you..



#16 RNwithPD

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Posted 01 December 2013 - 10:49 PM

Well, as I posted on another thread I've finally found out what is causing so much of my pain.  I have a C6-C7 disk protrusion which is totally obliterating the foramen for the C7 nerve, which explains why my shoulder and arm have been hurting and why my tricep muscle in my right arm is so weak.  They also found that I have "severe" carpal tunnel syndrome in my right wrist which is causing my fingers to go numb and tingle and causing the muscles in my hand to atrophy.  And finally, they happened to find that I have four nodules on my thyroid gland, one of which is so large that it is deviating my trachea to the right and probably accounts for why I have had several episodes of choking on food over the past few months.  I have an appointment with the general surgeon tomorrow afternoon to get a pre-surgical workup for my thryoid, and an appointment on Thursday with the neurosurgeon to schedule surgery on my wrist and cervical spine.  That's three surgeries!!! When it rains, it pours.  lol 

 

Kevin


Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 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


#17 Beau's Mom

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Posted 01 December 2013 - 11:15 PM

Kevin, be sure to take your Aware in Care Kit with you for any surgery, even outpatient. Last December I had the list of safe anesthetics with me and it saved my life. The anesthesiologist thanked me, because he had planned to use one which could have done lots of damage! I discovered during other inpatient stays that with most nurses, unless they are at a PD center of excellence, the Kit is not nearly as effective. Present company excluded, I'm sure. You know the importance of levodopa timing!


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#18 christie

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Posted 02 December 2013 - 05:34 AM

Kevin,

Get at least one more opinion before going under the knife. Surgeons are aggressive by nature and always want to cut. Discuss it with your neurologist too. An MRI finding may not always be clinically relevant.

 

Also, with PD in the picture, any muscle pain may be due to rigidity and dystonia unless proven otherwise.


Edited by christie, 02 December 2013 - 05:37 AM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#19 PatriotM

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Posted 02 December 2013 - 07:08 AM

Get at least one more opinion before going under the knife. Surgeons are aggressive by nature and always want to cut. Discuss it with your neurologist too. An MRI finding may not always be clinically relevant.

 

 

I agree 100%!!!  If you see a surgeon, they're going to want to do surgery (make money).  If you see a chiropractor, they're going to prescribe a spine adjustment (make money).  If you see a PD specialist, they're going to want to attribute things to PD and prescribe PD meds (make money).  If you see a psychiatrist, they're going to prescribe therapy (make money).  I am VERY CAREFUL about rushing into surgery of any type.  Doctors (and associated medical errors and unforeseen drug interactions) kill between 225,000 and 783,000 people each year (depending on which study you believe).  By comparison, auto accidents kill  about 35,000; "gun violence" (including suicides and accidents) kill about 30,000 people per year; and terrorists kill a whopping 7 people per year in the USA. 



#20 Daven

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Posted 02 December 2013 - 11:36 AM

Patriot,

 

Not all surgeons think that way.  My shoulder doctor recommended conservative treatment for my shoulder problems.  We did everything we could to help me avoid having surgery on my shoulder.  There is a point in time where surgery is your only option.  I go under the knife Friday afternoon to repair a complete rotator cuff tear and whatever damage I have done

 

Dave

 

P.S. Thanks for the warm and fuzzy in regards to surgery.






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