Gena
15 posts
Jul 02, 2009
12:31 PM
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Hi Everyone, Hope you're all doing well.I would just like to thank everyone who responded to my question for taking the time to help and advise me.You have all been very helpful.I guess I know deep down that it is a new symptom for me,I just didn't want to admit it. For everyone that asked,I am not on any meds at this time.MDS says I don't need any yet.Do you think he might change that now as I'm not sure I want to start on meds yet? Thank you all so much.It's great to be able to chat and get help when I need it. Gena
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Carol41
60 posts
Jul 02, 2009
1:45 PM
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Hi gena,have you been dx?
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Gena
16 posts
Jul 03, 2009
7:32 AM
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Hi carol, No I have not been dx as yet.18 mths and still counting!!you?
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Carol41
63 posts
Jul 03, 2009
7:44 AM
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Hi gena, no Ive not been dx yet, Ive et was dx with it at 16,do you hav a tremor?
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Gena
17 posts
Jul 03, 2009
2:43 PM
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Hi Carol, I also have ET of the head and neck,tried taking Primidone but they were too strong so I just put up with it.My neuro has tested me for ET in other parts of my body but now he knows it's not.He's pretty sure it's PD but because I live in the UK,you don't have PD until the neuro can prove it medically!!!(i know,it's mad!!!) I mostly feel an internal tremor in my right arm,weakness,cramps in both hands,right foot,toes,shin,limb pain and now this foot problem but I'm not sure it's what everyone else has.I'm not certain what "dragging" your heel is?any idea? How long have you been waiting for dx?What are your symptoms?Are you on meds?I'm not which in some ways is a blessing!
Last Edited on 3-Jul-2009 2:44 PM
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Carol41
75 posts
Jul 05, 2009
2:11 PM
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Hi gena, sorry im just readin your reply this min, yeah im on meds mysoline propanolol and cipralax,started on mysoline 1st, i hav it in my arms head legs jaw,i now hav these other symptoms,v sore lower back,neck pain,stiff left knee,my left heel drags when Ive been walkin or els i stub my right toe i half 2 watch the ground when in walkin,Ive diff gettin up frm sittin in a chair and my legs just go dead unless i keep movin them,my right arm locks at the elbow and shouldier and my joints crack all the time :) thers other things 2 but Wud take up whole msg board! :) how our you keepin any change in symptoms?
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Carol41
76 posts
Jul 05, 2009
2:26 PM
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Im from belfast by the way :) think most ppl on this our american
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Carol41
79 posts
Jul 05, 2009
3:10 PM
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Also my right arm downt swing when i walk and i cant turn ova in bed properly cause of my back,its sort of like my legs get left behind when i turn ova then i wake up with the pain of it v annoyin! Havnt bin 2 see neuro in 5yrs cause i was gettin my blood tested 4 2yrs and a whole load of tests 2 see wat was wrong with my blood so i just got fed up gettin tested
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DKBlues
7 posts
Jul 06, 2009
9:37 PM
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Hey Gena,
My wife is from Scotland so I know how the system works over there. Its not much better here in US.
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