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RNwithPD

Sudden Progression?

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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

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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.

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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.

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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...

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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

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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

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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.

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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

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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

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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.

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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

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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..

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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

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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!

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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
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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. 

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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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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.

 

My view on this is also based on my personal experience. Shortly before my PD diagnosis I had a total of three (painful and largely unsuccessful) wrist surgeries for wrist pain and rigidity...These symptoms were -as normally expected-attributed to my recent wrist fracture and a particularly severe post-traumatic arthritis. Too bad that wasn't the real cause. Despite the impressive x-ray, CT and MRI findings, all indicating completely  damaged cartilage and ligaments, and pointing to wrist surgery as the ONLY option to get some relief, my symptoms were not relieved by surgical treatment. It would take two more years, and one ingenious neurologist to figure out that my wrist symptoms were mostly due to PD-related dystonia and not arthritis. Had I known this earlier, I would have been spared of at least two unnecessary surgeries...Surgeries  aiming at fixing something that-although broken indeed-was not to blame.

Edited by christie
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First of all, thank you all for your responses.  Working in a post cardiovascular surgery unit I'm well aware of surgeons performing surgeries that, while medically necessary, are ethically questionable and ill advised.  So I realize that their recommendations can be biased. 

 

The problems that I'm having are much more than just pain issues.  I have extreme weakness in my right hand as well as my right tricep which has been getting progressively worse over the past six months.  If I don't have surgery, I could very well lose all function in my right arm.  I had two different neurologists tell me that I needed surgery right away on my right hand because of the muscle wasting, and that the neurosurgeon "might" want to do something about my cervical spine while they're at it. So, rather than suggesting conservative treatment which would make them money, they both suggested that I see a neurosurgeon.  However, my primary physician said that the bigger issue was the large nodules on my thyroid and suggested that I see a general surgeon - whom I personally selected because I know him and he comes highly recommended by staff and patients alike.  He said that the current trend is towards doing fewer biopsies and only operating when the nodules start causing a problem.  In fact, he said that that they're even holding off on surgeries if the nodule is found to be malignant unless it starts causing a problem.  He performed an ultrasound and also looked at my MRI and recommended that I have the neurosurgeon look at my C-spine first, and then follow up with him on the thyroid in about six months to see if it's getting any bigger.  He felt that the compression of the C7 nerve was the most pressing issue.  When I went  to the neurosurgeon, she performed a physical exam that revealed extreme weakness in the right hand and right tricep.  Even though the two neurologists had indicated that the carpal tunnel needed to be take care of first, she immediatey focused on the cervical spine just as my general surgeon had done.  She took me into her office and showed me my MRI pictures and explained what was going on, what could be done about it, and then left it up to me to decide.  She was very careful not to promise me any guaranteed improvements, but rather that the surgery would at least stop the progression of the muscle wasting and might allow me to regain some strength.  She informed me that there was no guarantee that the pain would go away, and even said that the pain might get worse before it gets better.  Something about relieving the pressure off the nerve could lead to temporary swelling which can increase the pain.  She said that she would probably recommend more conservative treatment for the carpal tunnel.

 

Anyways, I feel that I should have the surgery because my general surgeon and the neurosurgeon - who are with totally separate medical groups - both felt that it needs to be done not for the purpose of pain relief, but to prevent the loss of function in my right arm.  My neurologist and PCP are in agreement, so I'm scheduled for surgery on December 13th to have a disk replacement and fusion of the C6-C7 vertebrae.  I'm not looking foward to it and realize that I'm going to be in severe pain for a while, but I'm hopeful that eventually I'll see some improvement in function.

 

Thanks for all of your thoughts and words of advice.

 

Sincerely,

 

Kevin

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Kevin- I had both cervical spinal fusion  at C5-C6 and carpel tunnel release surgery ( among other things in the past 10 years). The latter made a fantastic difference in the use of my right hand and I have no regrets- recovery with a occupational therapist made all the difference. The neck surgery took a little longer time to recover from and my neck is a sensitive area still that the PD causes to stiffen regularly- dopamine agonists like Requip seem to help. If you have the fusion just be aware that relief after the surgery is not immediate and takes some time and attention to how you hold and exercise your neck. I highly recommend massage about 3 months post surgery.  Best of luck, and I hope you have speedy recovery :)

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kevin I had c5-6 done in 2001 and still am doing good with that but as was mentioned with the pd my neck stiffens but meds seem to help. I think you will feel better. learning relaxation techniques will help. Bless you and Best of luck. 

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