IhavePLS
Distinguished member
- Joined
- Apr 17, 2011
- Messages
- 279
- Reason
- DX UMND/PLS
- Diagnosis
- 12/2010
- Country
- US
- State
- Pennsylvania
- City
- SW
Hi to everyone,
I apologize for not having had been on the forum for quite a while, but I've been awfully busy (no excuse, as I also need to support other with my insights on this nasty disease). Therefore, mea magna culpa.
What are your thoughts concerning acute exacerbations of PLS symptoms? While I always have symptoms, on an infrequent basis, they seem to accelerate. This takes me aback, as I never quite expect it. It's a lot like the exacerbation the "pros" describe for M.S. patients...guess what? I think we have it too.
What happens? Well, I have sensations of the flu (confined to the legs), fatigue, depression, rumination ("WHY am I not well at 52 years of age?"), ataxia, dizziness, restless legs and arms at night (sleep poorly, complicating all of the above), leg pain, periodic difficulty chewing food (my jaw muscles can't tolerate it). Interestingly, I was just given a VNG test, and I have nystagmus that is not related to inner ear problems - but to inability to follow moving things - this is neurologically related, I'm told (how? I don't know)...but it is causing vertigo - and a LOT of it - nausea and some vomiting to boot.
A really weird - and disconcerting - change has been onset of pseudobulbar affect...and this entirely coincidental to uptake in symptoms. I've never been an emotional person (trust me on that one). BUT...with the recent exacerbation of symptoms, I've find myself tearing up at the oddest things, i.e., things on TV - like the Olympics - that would NEVER have bothered me like this before. I don't feel a sad or emotional response, per se, but I do tear up. And this has been consistent with the recent uptake in my symptoms. I do feel angry at times, and depressed...but not related to PLS (I've accepted long ago). It's symptom management that I want and need - you know, quality of life? The crying stuff is not depression related, I can assure you -- it comes out of nowhere - AND at the stupidest, mundane stuff. For example, I was watching a TV show the other night in which a CEO who had gone undercover was helping a worker to dolly boxes up and down city steps. I cried (HELLO? Are you kidding me?) :shock: Thank the good Lord I work from home - I can cry alone in my office, and no one can see me - because I refuse to use a webcam in live meetings.
I wonder why I simply can't be well -- feel like I want to go to the mall or friends' homes - or whatever. But my symptoms cause me to feel so awful that lying down on my bed or couch are much, much easier to handle (AND I won't find myself bawling in front of people).
I've just had a change in meds: Completely off of Baclofen (was 80 mg/day) and Neurontin (was 1600 mg/day) -- and was placed on Zanaflex (20 mg/day). I've now begun to have seizures (go figure! - fell through a plate glass door two months ago), and I'm not on Tegretol and Klonopin as well.
But there but for the grace of God go I.
Mike
I apologize for not having had been on the forum for quite a while, but I've been awfully busy (no excuse, as I also need to support other with my insights on this nasty disease). Therefore, mea magna culpa.
What are your thoughts concerning acute exacerbations of PLS symptoms? While I always have symptoms, on an infrequent basis, they seem to accelerate. This takes me aback, as I never quite expect it. It's a lot like the exacerbation the "pros" describe for M.S. patients...guess what? I think we have it too.
What happens? Well, I have sensations of the flu (confined to the legs), fatigue, depression, rumination ("WHY am I not well at 52 years of age?"), ataxia, dizziness, restless legs and arms at night (sleep poorly, complicating all of the above), leg pain, periodic difficulty chewing food (my jaw muscles can't tolerate it). Interestingly, I was just given a VNG test, and I have nystagmus that is not related to inner ear problems - but to inability to follow moving things - this is neurologically related, I'm told (how? I don't know)...but it is causing vertigo - and a LOT of it - nausea and some vomiting to boot.
A really weird - and disconcerting - change has been onset of pseudobulbar affect...and this entirely coincidental to uptake in symptoms. I've never been an emotional person (trust me on that one). BUT...with the recent exacerbation of symptoms, I've find myself tearing up at the oddest things, i.e., things on TV - like the Olympics - that would NEVER have bothered me like this before. I don't feel a sad or emotional response, per se, but I do tear up. And this has been consistent with the recent uptake in my symptoms. I do feel angry at times, and depressed...but not related to PLS (I've accepted long ago). It's symptom management that I want and need - you know, quality of life? The crying stuff is not depression related, I can assure you -- it comes out of nowhere - AND at the stupidest, mundane stuff. For example, I was watching a TV show the other night in which a CEO who had gone undercover was helping a worker to dolly boxes up and down city steps. I cried (HELLO? Are you kidding me?) :shock: Thank the good Lord I work from home - I can cry alone in my office, and no one can see me - because I refuse to use a webcam in live meetings.
I wonder why I simply can't be well -- feel like I want to go to the mall or friends' homes - or whatever. But my symptoms cause me to feel so awful that lying down on my bed or couch are much, much easier to handle (AND I won't find myself bawling in front of people).
I've just had a change in meds: Completely off of Baclofen (was 80 mg/day) and Neurontin (was 1600 mg/day) -- and was placed on Zanaflex (20 mg/day). I've now begun to have seizures (go figure! - fell through a plate glass door two months ago), and I'm not on Tegretol and Klonopin as well.
But there but for the grace of God go I.
Mike
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