Parkinson's Disease Tulip


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Old 04-29-2013, 06:29 PM #1
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Default Weak Legs, Sciatica, Back Pain

Has anyone found any relief for Weak Legs, Sciatica, Back Pain? I have all in abundance and it's wrecking my already difficult life--much harder now to walk, exercise, find a comfortable position. What worked for you? I also had weak legs & cramping for a while a few years ago, which basically resolved when I cut back on Sinemet, but now it seems here to stay.

Based on my own experience, plus comments I've seen here and from many Parkies I know, it seems related to PD and/or some PD meds, but some doctors apparently don't agree. What do you think?

It's really getting me down...
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Old 04-29-2013, 10:59 PM #2
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Default Back Pain etc.

Quote:
Originally Posted by Peony View Post
Has anyone found any relief for Weak Legs, Sciatica, Back Pain? I have all in abundance and it's wrecking my already difficult life--much harder now to walk, exercise, find a comfortable position. What worked for you? I also had weak legs & cramping for a while a few years ago, which basically resolved when I cut back on Sinemet, but now it seems here to stay.

Based on my own experience, plus comments I've seen here and from many Parkies I know, it seems related to PD and/or some PD meds, but some doctors apparently don't agree. What do you think?

It's really getting me down...
Well, for me those were unbearable side effects that went away when i stopped taking sinemet and have not returned. My Dr insisted that that would not help but make it worse....ha!
Most dont like to hear that for some reason but there it is.


Peace BP
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Old 04-30-2013, 03:09 AM #3
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Quote:
Originally Posted by Peony View Post
Has anyone found any relief for Weak Legs, Sciatica, Back Pain? I have all in abundance and it's wrecking my already difficult life--much harder now to walk, exercise, find a comfortable position. What worked for you? I also had weak legs & cramping for a while a few years ago, which basically resolved when I cut back on Sinemet, but now it seems here to stay.

Based on my own experience, plus comments I've seen here and from many Parkies I know, it seems related to PD and/or some PD meds, but some doctors apparently don't agree. What do you think?

It's really getting me down...
Peony,
I gather you've had PD for a number of yrs.
Perhaps the back pain and cramping are dystonia?
The weak legs and inability to get comfortable, walk easily and exercise could mean you're just plain "off" and maybe need to up your dosage of Sinemet and see if that helps ease some or all of those problems.
Are you seeing a neurologist with a special interest in PD or a movement disorder specialist?
They're much more knowledgeable about PD than most Drs.
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Old 05-02-2013, 03:50 PM #4
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BP: I tend to agree with you on Sinemet side efffects & also that some doctors & even some patients don't want to hear my experience if it doesn't jibe with theirs. Sometimes people generalize and assume all Parkies are alike in symptoms & treatment responses, but it just ain't so. Sinemet doesn't do much if anything for my main symptom, a really bad tremor, but at this stage, 6 years after diagnosis, it does seem to help improve slowness, sleep, and at least one specific horrendous upper back pain. Unfortunately, it also gave me some bad side effects: weak legs and right foot/toes & leg curling upward & inward plus muscle cramping. I keep the dosage low, but seems nothing's ever perfect in Parkie land!
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Old 05-02-2013, 04:02 PM #5
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Made it Up: I was diagnosed 6 years ago, but had what I now believe were PD symptoms long before that. And yes, I do see a good MDS neurologist. As I indicated in my initial post, the Sinemet actually gave me weak legs & cramping, also toe curling, etc., a few years ago, which basically went away when I decreased dosage. So it's not an "off" problem, just the opposite. Now I need the Sinemet more than I did then for slowness, sleep, etc., and the weak legs, etc., and it's getting harder I guess to find a balance between relief & side effects. So what else is new, right?
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Old 05-02-2013, 04:42 PM #6
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Default I may have something to help

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Originally Posted by Peony View Post
Made it Up: I was diagnosed 6 years ago, but had what I now believe were PD symptoms long before that. And yes, I do see a good MDS neurologist. As I indicated in my initial post, the Sinemet actually gave me weak legs & cramping, also toe curling, etc., a few years ago, which basically went away when I decreased dosage. So it's not an "off" problem, just the opposite. Now I need the Sinemet more than I did then for slowness, sleep, etc., and the weak legs, etc., and it's getting harder I guess to find a balance between relief & side effects. So what else is new, right?


Peony-
Oddly enough, I starteda long postpone experiment yesterday and my first reaction was along the lines of "Damn! This may actually help in a big way!"

Everyone knows about vitamin B12, right? Everyone has tried it, right? I mean, it is so obvious. What kind of White Rat would charge right past a cheap vitamin that he had heard of all his life? Well, I'll tell you. A deeply chagrinned and somewhat embarrassed one. But, looking over the archives here, I find that I am not alone. There is a little discussion of it but nothing like has been put into "sexier" things like mucuna or such.

So, let's change that.....

Wikipedia-
"Vitamin B12, vitamin B12 or vitamin B-12, also called cobalamin, is a water-soluble vitamin with a key role in the normal functioning of the brain and nervous system, and for the formation of blood. It is one of the eight B vitamins. It is normally involved in the metabolism of every cell of the human body, especially affecting DNA synthesis and regulation, but also fatty acid synthesis and energy production. Neither fungi, plants, nor animals are capable of producing vitamin B12. Only bacteria and archaea have the enzymes required for its synthesis, although many foods are a natural source of B12 because of bacterial symbiosis. The vitamin is the largest and most structurally complicated vitamin and can be produced industrially only through bacterial fermentation-synthesis."

I am going to break this up to avoid massive text loss, but stay tuned...
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-02-2013, 10:59 PM #7
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I would go as far as to say get checked out for B12 deficiency. But try Ricks suggestion too. It could help.

B12 is a hobby horse of mine as I have Pernicious Anaemia as well as PD. The first thing my doctor asked me was, did I think there was any possible link to my long term medications. I looked it up and one of the US PD sites has a fact sheet about it. (Sorry I forget which one.)

I am still not properly medicated for it, but when I have a shot the symptoms you describe which have been making walking quite difficult for me go away for a few days. You may not have the same problem as me, but it is worth a try.

The toe curling though is likely dystonia from wearing off/on. I thought all the leg and walking stuff was from the same source, and put it down to dystonia.

If B12 does work, and I have to say I have only had brief respite, then the PD symptoms stand out much clearer, and it is easy to tell which are which.
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Old 05-02-2013, 11:05 PM #8
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There's a B 12 sticky thread on the PN forum-
STICKY - The Vitamin B12 Thread
http://neurotalk.psychcentral.com/thread85103.html
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Old 05-03-2013, 01:48 AM #9
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Default Run, hop, or crawl

....over to the link that JoMar posted above. There's a lot to be learned but I can already tell it will be worth every minute spent.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 07-09-2013, 01:37 AM #10
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Quote:
Originally Posted by backpacker11500 View Post
Well, for me those were unbearable side effects that went away when i stopped taking sinemet and have not returned. My Dr insisted that that would not help but make it worse....ha!
Most dont like to hear that for some reason but there it is.


Peace BP
Thanks for your interesting reply. Please tell me more about your experience, and also have you found anything (meds or other) that works well for you? See more about my similar experience, posted today under the current thread about stopping Sinemet.
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