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 downward turn?? hallucinations, leg pain and restless legs.. 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post downward turn?? hallucinations, leg pain and restless legs..
going to the doc on wednesday and wanted to go over a few things, to try and get some ideas from all of you, to discuss with her..

hubby had been doing really good.. has some off and on days and a bit more confusion... but not bad for living with lewy, for more than 12 years...

however the last few weeks , hes been struggling.. with memory , words, being in reality,. has lots of anger.

he also has been having lots of leg pain.. this has been going on for over three years.. we have removed statins, had xrays etc and nothing.. its getting worse.. mostly the right leg above the knee.. hard to walk, constantly rubbing leg... i thought it might over use ??? but the last week he has been pretty quiet and he still in as much pain.. he is showing signs of parkinisum's(sp?), but no parkinson's diagnoses..

yesterday he had a really rough day.. very confused, very angry and before he went to bed, he was slightly hallucinating.. small animals, bugs, things on the floor etc... after he went to bed he was up and wandering off and on.. took him back to bed 6 or 7 times.. he was so restless, his legs were moving a mile a minute.. they were hurting, they were itching.. i took off the comforter and just laid a few light blankets on him.. that seemed to help, but not fix... he is on 25 mil of serequel and i wondered about giving him a bit more??( the doc started him on 100,??? but ive never given him more that 25.. wanted to increase slowly and never felt the need, prior to last night) he is also on 30 mlg mirtazaprin at bedtime. his hallucinations grew to be pretty bad last night and he lost most all his words, and couldnt communicate, much at all.. but i finally got him settled about 3 am and hes still asleep..

have any of you dealt with ..continuous leg pain?? restless legs??? more sereguel for hallucinations??? any thoughts??? any help ?? any suggestions for tests or questions to doc??

this is the internal medicine doc, we are seeing.. the nuero doc is 2 hours away, thru the va.. and so she has been saving us the trip and prescribing the meds for him..shes really good, but neither seem to be really knowledgeable in LB!! so that is why im asking for your input... so i can do some research and have my questions ready...


thank you all so much .. any help is appreciated...you are the best!!!

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Nov 17, 2012 12:05 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: downward turn?? hallucinations, leg pain and restless le
Cindi
Sorry for the place we all find ourselves. From what you are describing, it may be the beginning of the Parkinsons .... My husband began with that 14 years ago, so was always on PD meds...some of the PD symptoms are restless legs, muscle cramps, and pain. I just began learning about Lewy when his first hallucination appeared about 3 years ago, and he was dx with PD/Lewy Body Variant. From what I have heard and learned Parkinsons symptoms will appear ... Some of the Parkinsons symptoms early on are the same as Lewy Symptoms. Soft voice, small handwriting, visual/spatial problems, small steps etc. You may want to discuss with the Doctor about Mirapex and Requip, which are the recommended meds that are given in the beginning of PD...and are also used for restless legs. Hope the visit goes well....Happy Thanksgiving. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sat Nov 17, 2012 1:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: downward turn?? hallucinations, leg pain and restless le
My husband also went through a period of left thigh pain that several MRI and X-rays [back and hip] failed to diagnose. No OTC pain medication had any effect. His neurologist suggested it was likely the muscle stiffness from PD. It seemed to get better after a while.

My husband has been on Seroquel for about 2.5 years now and has increased from 25mg twice a day [we actually started him on 12.5mg] to 50mg three times a day. He still hallucinates but I am not inclined to want to increase it at this point as I'm worried about side effects.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Nov 17, 2012 3:25 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: downward turn?? hallucinations, leg pain and restless le
thank you pat and carol...

i appreciate your posts and help.. i will take lots of notes to the doc... its so interesting on the parkinsons, as he has been having lots of issues that lead me to believe that hes is in the beginning stages...but the docs just keep saying its parkinisims.... but this pain in his thigh is getting worse and worse and its hard for him some days , to walk from the car to the store.. its only on one side.. it would seem that if it was over activity, it would be on both...?????

again thank you both so much~~~

happy thanksgiving to everyone...

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Nov 18, 2012 10:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: downward turn?? hallucinations, leg pain and restless le
Cindi, I would hope that he at least had an x-ray of his hip. Parkinson's symptoms are not necessarily bilateral, however. Is he on a PD medication, like Sinemet?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 18, 2012 11:20 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: downward turn?? hallucinations, leg pain and restless le
pat,

they did an xray of his leg, only.... and he is on no pd meds.. they say he has parkinisims...not parkinsons... would it be a ok to try one of the pd meds, to see if he would get relief?? are there any known side effects/ or conflicts for folks with lb??

thank you...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Nov 18, 2012 12:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: downward turn?? hallucinations, leg pain and restless le
Cindi, only his neurologist can decide that. Certainly, drugs like Sinemet do reduce muscle stiffness and other PD symptoms but the relief sometimes comes at the cost of increased hallucinations, delusions and, occasionally, agitation. My husband is on high doses of Sinemet. Without it, he would not be able to swallow, his drooling would be worse and he would likely have no motor function at all. As my husband's neuro explained early on, drugs for PD/LBD are always a balancing act. He is on Sinemet, Seroquel and Exelon patch.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 18, 2012 12:44 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: downward turn?? hallucinations, leg pain and restless le
thanks again pat...

wasnt going to do anything with out the docs approval, for sure... :wink:
but i have a freind who has pk and the doc did put him on the meds to see if they helped.and also to clarify he had pk??!!. he didnt have lb.. but after a few months, it was very clear he had pk... he has had it for about 4 years now and if i didnt know that, there is nothing i can see in his gait or any tremors that would lead me to believe that any thing was wrong....

i keep hearing pk is like other things and best to get on the meds as soon a possible, to slow the decline.. and this will be year three of this pain, that continues to grow worse!! dont want to push, but dont want to wait till its too late for him, either... we'll see how it goes on wednesday..

thank you again!!

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Nov 18, 2012 4:32 pm
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Joined: Fri Apr 05, 2013 6:34 pm
Posts: 17
Post Re: downward turn?? hallucinations, leg pain and restless le
My hubby has LBD w/Parkinsonism and he takes Ropinirole for the PD symptoms. The usual PD meds just didn't help with the tremors and shuffled gait, etc. He also has to take meds for muscle cramps and pain, which are mostly in his lower extremities. These, I am told are from the PD end of his illness.... Don't know if I have been helpful... just be sure you get a good diagnosis from a good medical team, preferably a neurologist and a neurological psychologist. That is all of the advice I can give. God bless...


Thu Dec 19, 2013 7:35 pm
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