Hey all.I have been having a problem with my legs lately they just wont stay still and when i walk about the left leg has a mind of its own until i slow right down to a crawl .Does any b ody else suffer this and if so what can i do about it its getting worse eachday and i cant even sit still anymore.My drugs are 3 sinemet plus 200mgs 3 stalevo 200 and 12 mgs of ropineral 50mgs of amytripylins
i would also like to add a note about the constant groin pain i fell .I am going to a physio hope that bworks
Hi Penfold. Can't really advise you from a medical point of view. Keep a diary and record all your symptoms, however trivial they may seem, and let your neuro or PD nurse (if you have one) decide on the best course of action. Meanwhile try to fit in some regular light exercise. This does not have to be too strenuous, just gentle stretching and bending.
Good luck!...Chris
Good luck!...Chris
Hi Penfold,
Have you taken a look at our information sheet on Restless legs syndrome? You can find it here: http://www.parkinsons.org.uk/default.aspx?page=10518
It may also be worth ringing one of the Parkinson's nurses on the helpline if you would like to discuss this in more detail or want more specific information. The number is 0808 800 0303.
I hope this helps,
Ezinda
Have you taken a look at our information sheet on Restless legs syndrome? You can find it here: http://www.parkinsons.org.uk/default.aspx?page=10518
It may also be worth ringing one of the Parkinson's nurses on the helpline if you would like to discuss this in more detail or want more specific information. The number is 0808 800 0303.
I hope this helps,
Ezinda
Hi Penfold
isn't what you describe dyskinesia rather than restless leg syndrome? I thought RLS occurred during sleep rather than walking?
isn't what you describe dyskinesia rather than restless leg syndrome? I thought RLS occurred during sleep rather than walking?
I have muscle spasms in my arms and legs and Restless Leg Syndrome. Only relief from RLS ( which is only experienced at night) is to get out of bed and walk about the house.Recently given Magnesium supplement which has helped both.
Worth a try
Toots
Worth a try
Toots
Hi. I have had some success with Gabapentin, prescribed by my GP.
I had chronic RLS. Ammantadine did the trick.
Hi all,
Thanks turnip (again) and Tootsie for pointing out the fact that this could be dyskinesia.
The info sheet on Restless legs syndrome actually says that with that condition, the irresistible urge to move the legs happens during sleep but also "during quiet wakefulness" such as when sitting and watching TV. Hence, the confusion.
I passed the post to one of our nurses and she's said that it is hard to tell from the information here whether the movements are due to RLS or dyskinesia.
The information sheet on dykinesia is here: http://www.parkinsons.org.uk/default.aspx?page=10513
It may be a good idea to review both information sheets and as Christo suggests, keep a diary of your symptoms. You can take this with you when you speak to your Parkinson's nurse or specialist so that they can review your symptoms.
I hope this helps!
Ezinda
Thanks turnip (again) and Tootsie for pointing out the fact that this could be dyskinesia.
The info sheet on Restless legs syndrome actually says that with that condition, the irresistible urge to move the legs happens during sleep but also "during quiet wakefulness" such as when sitting and watching TV. Hence, the confusion.
I passed the post to one of our nurses and she's said that it is hard to tell from the information here whether the movements are due to RLS or dyskinesia.
The information sheet on dykinesia is here: http://www.parkinsons.org.uk/default.aspx?page=10513
It may be a good idea to review both information sheets and as Christo suggests, keep a diary of your symptoms. You can take this with you when you speak to your Parkinson's nurse or specialist so that they can review your symptoms.
I hope this helps!
Ezinda
Hello Penfold.
I rather agree with Turnip - your symptoms sound very similar to dyskinesia. I found that my left leg shook when I was concentrating on something, especially when using fine motor skills, like typing for example, or when I got tired, especially on 'off days'.
Since DBS I have stopped taking Stalevo and have had no dyskinesia, even when typing this. Although the DBS has had it's problems, I do feel better without the Stalevo, no sickness in the mornings, clearer thought processes and no dyskinesia. I was taking 125 mg x 6 daily. I still take Sinamet 62.5 mg x6 so I don't think it was just the DBS that sorted the Dyskinesia.
Back into hospital tomorrow for re-programming of the neurostimulator so hopefully back to the 100% loss of tremor I enjoyed earlier this month ! They say you never miss something until it is gone, let me assure you that 'they' lie like a cheap carpet. It was bliss...
I hope that helps add to the discussion,
Regards,
007.
I rather agree with Turnip - your symptoms sound very similar to dyskinesia. I found that my left leg shook when I was concentrating on something, especially when using fine motor skills, like typing for example, or when I got tired, especially on 'off days'.
Since DBS I have stopped taking Stalevo and have had no dyskinesia, even when typing this. Although the DBS has had it's problems, I do feel better without the Stalevo, no sickness in the mornings, clearer thought processes and no dyskinesia. I was taking 125 mg x 6 daily. I still take Sinamet 62.5 mg x6 so I don't think it was just the DBS that sorted the Dyskinesia.
Back into hospital tomorrow for re-programming of the neurostimulator so hopefully back to the 100% loss of tremor I enjoyed earlier this month ! They say you never miss something until it is gone, let me assure you that 'they' lie like a cheap carpet. It was bliss...
I hope that helps add to the discussion,
Regards,
007.
Hi all thnx
for asll your comments it probably is dyskensia have tried amantadine but it didnt do much .The reason i asked about it was because of the constantt pain im in is real teeth jarring stuff im hoping physio will help but i dont know will let you all know :}
for asll your comments it probably is dyskensia have tried amantadine but it didnt do much .The reason i asked about it was because of the constantt pain im in is real teeth jarring stuff im hoping physio will help but i dont know will let you all know :}
hey 007 im also up for dbs can you relay too me your experiance with that because all i have read is negative and making me slightl nervous about the whole idea
Penfold,
I will e-mail you as I am getting a lot of enqs about DBS.
All I can say is a month after 'switch on' is "it works for me !"
regards,
007 (although I am not shaking any more - BLISS !!)
I will e-mail you as I am getting a lot of enqs about DBS.
All I can say is a month after 'switch on' is "it works for me !"
regards,
007 (although I am not shaking any more - BLISS !!)