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Patients Spasticity
Where is your spasticity?
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JosephineO
Community managerGood advisor
@Sk8rGirl @kyuuketsuki_kurai @iian22 @Juliette @Karen56 @Yank34 @HazelRutter @thecaptainjohn @kathy52 @Sandy12 @hayles @BoneShaker @Helenak @Linz1978 @Tracey961 @Kencomax @progressive @FredaBurke @Bagpuss66 @Halfpint26 @trish444 @George @stuart10mcintosh @andrewdodd @Sallyford @BShields @Rarebits @PatriciaGriffin @Nanaclaire @jamie @Kazzeranne @Desertflower @Chooks @GalDriver @Beautiful_Disaster @AndrewB @pinklady @CathBriggs @Charlie74 @Jammieone @grace2000 @TheWillow82 @Motaway @CloththeGoth @Blueribbon68 @Aprctr @JanElliott @StillSmiling @LondonLiz @Willow10 @chanty @Paula11 @Psulsayhi @scarletlady69 @Swipermonkee @Fobelets @wifebund @Angel511967 @Karen1976 @Lindseymarcy @Florestina @bouncy321 @LGriffin @Rachie-chick
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Josephine, Community Manager
Juliette
Good advisor
Mine was in my calf. I had botox for it which took away the clonus.
hayles
My spacisity is nearly everywhere but mainly in my legs
Sk8rGirl
Good advisor
My spascity is mainly in my legs, especially the right one. It goes straight as a board and hard as a rock. I can’t take baclofen and the tizanadin doesn’t seem to work. I take Botox which covers the pain but not the spascity. Ugg
PatriciaGriffin
I take baclofen for my legs really works 1 a day half in morning half at night. MY MS nurse put me on them marvellous .
Yank34
AmbassadorGood advisor
My spasticity affects both my lower limbs (from toes to groin), both my arms, (but can also include the right side of my neck, extending around/below the scapula-shoulder blade and right shoulder as well as my lower back. Luckily the majority of my spasticity is intermittent but always unpredictable. Unfortunately on a few occasions, especially when my spasticity has become extremely severe, this has a "knock-on" affect re: on my joints (i.e. ankles/knees), causing sudden, spontaneous movement way beyond their normal "range of movement"!! This actually happened 2 nights ago, in bed, when I woke up on 4 separate occasions, during the "early hours". Each episode lasted about 10-15 minutes, causing excruciating pain and complete inability to do anything but writhe in agony. About 5 years ago, swimming "lengths" in a private pool, luckily with my husband, a few metres before reaching the "deep end" (and rail), my right heel "attached itself" to my right buttock! I had no choice but to swim to the rail using 3 instead of my 4 limbs and wait about 5 minutes before it relaxed and "unattached itself"! I think I was in such a deep state of shock that I don't really recall this being painful!
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Ann
Sk8rGirl
Good advisor
Yank34
AmbassadorGood advisor
Yes...…...I am 1 of the very "fortunate" people re: although only formally diagnosed with MS in 2013, MS was queried by a Neurologist I had to see privately (couldn't wait the 9 months to see 1 on the NHS), was erroneously diagnosed/treated for trigeminal neuralgia (TN) in the Spring of 1978. Between 1978 (the TN lasted, unremittingly for almost 2 yrs!) and 2013, experienced almost every symptom of MS but because it must have Relapsing Remitting (although these various symptoms began to "be experienced" for longer periods of time and increasingly more frequent/problematic from about 2005), I was very deeply "in denial" until I was in REAL TROUBLE! I can still walk, remain relatively independent but often walk like "I'm drunk", sometimes limp (to varying degrees) and often "not safe" to leave the house +/or drive...…..my MS is totally unpredictable but have learned (and still learning!) how to manage it in the best way possible - depending on what "it" is doing at any given time! I think I have "rambled on" long enough...…..absolutely great to "meet you" Sk8Girl - and perhaps we can start "talking" more regularly if you want? Totally agree with you - only people with MS can really "believe"/know/understand anyone else with this x
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Ann
Pleasance
Good advisor
Mine comes out in my legs, it can be horrible shaking. I take injections every couple of months and that does help.
@Yank34 I know where you are coming from, it can be so unpredictable from day to day.
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Pleasance
PatriciaGriffin
I walk like I am drunk every day. Have to use a stick, can still drive but can sleep at night. I'm 69years old and was diagnosed when I was 66 Dr said I probably had it for a long time did have aching legs but I thought it was restless legs but my left foot started to drag that's how it began. I hate that I can't walk properly keep trying though. On baclofen and Gabpentin for legs.
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JosephineO
Community managerGood advisor
Spasticity is a difficult condition that causes certain muscles to relax and contract which creates jerking movements. It is generally located in arms or legs.
Where is your spasticity located?