Restless legs

[sarahb01]

My brother John suffers from what the doctors have decided is CBD, at first they thought PSP. " Restless Legs" are driving him CRAZY!! DR. has prescribed medication, no relief! John says it's like his legs are having seizures. Anyone with any experience with this PLEASE REPLY! Best Wishes to all that are dealing with these Dreadful Diseases!

[Marie_14]

Sarah I have no experience of this but I do recall someone saying tonic water was good. Also bananas.

There are new drugs I think too. Perhaps your brother wasn't tried on them? Apart from that I have no suggestions. Other than contact his Neurologist and PSP Association. I am sure they will know more than I do.

Good luck to you and your brother.

Marie x

[sarahb01 in reply to Marie_14]

Thank You!

[DoreenC]

My mum had restless legs and she took ropinerol which worked very well for her. I don’t think hers felt like seizures but it is very much worth a try. Good luck it’s horrible X

[sarahb01 in reply to DoreenC]

Thank You!

[Kevin_1]

Hi Sarah

Adding to the other two replies.

Exercising the legs... helps a lot.

My wife did hydrotherapy when she could no longer manage the exercise bike.

[sarahb01 in reply to Kevin_1]

Thank You!!

[AnneandChris]

Hello there

Snap!

My husband had awful restless legs and used Magnesium oil for a long while (available from health food shops).

However after a while that didn't work and his neurologist prescribed Clonazepan which stopped it completely. He now sleeps through the night, perhaps waking once for a pee.

So hope this info helps.

Keep on, keeping on

AnneandChris

[sarahb01 in reply to AnneandChris]

Thank You!

[AnneandChris]

Forgot to say had a small exercise bike which helped too.

AnneandChris

[Val4521]

I too have CBD and can sympathise with your brother. When I am sitting my legs are constantly on the move. It’s like they have a mind of their own. If they are restricted in any way I feel quite panicked and have to move. It is particularly bad on the left side but that is the side which is most affected by the CBD. Sometimes my left arm does it’s own thing as well but that is easier to control as I just pin it down with my right hand. Good luck to you and your family as you navigate your way through this terrible disease.

All best wishes. Jackie C

[sarahb01 in reply to Val4521]

Thank You!!

[Richard33]

Hi,

Ruth (with CBD) was prescribed Baclofen 10mg for restless legs / myclonic jerks when she is trying to fall asleep. But the pills made her feel dozy the following day. I think it helped but she was nowhere near as bad.

Richard

[sarahb01 in reply to Richard33]

Thank You!!

[Bhill46]

Magnesium in high dosage is reported to help. Limited research indicates that cannabidiol, a non-psychoactive compound found in cannabis, stopped restless leg and improved sleep for some patients. Here’s a link to research that may be helpful. medicalmarijuanainc.com/res...

I keep hoping and praying for success in discovering a cure for all the neurological diseases on the CBD/PSP spectrum. My beloved, patient, long-suffering husband generously plans to donate his brain to MGH Neurology in Boston. For 3 years he’s been volunteering in a research study of CBD/PSP led by his MGH Neurologist, who is brilliant and compassionate. Forever grateful for him.

Thank you all for sharing your insights, wisdom and coping strategies. Your empathy and deep understanding through day to day experience of this torturous, long journey for our beloved sufferers and for us who love and try to help them in the best ways we possibly can, is an invaluable support. Thank you all.

[sarahb01 in reply to Bhill46]

Thank You!!

[Bhill46]

Best wishes! Please let us know what you try and what works! It may take some time.

[sarahb01 in reply to Bhill46]

Sure Will! Thanks Again!!

[Astridnova]

This can be a sign of low Vitamin B12, which causes demylination of the nerves. Be sure that your brother has levels well above the low therapeutic threshold as many people have symptoms until they are well above 'therapeutic levels'. You can find out more from discussions about pernicious anaemia or Vitamin B12 deficience. These conditions often accompany thyroid disease, diabetes and crohns disease in a complex syndrome. However B12 deficiency seems to be rising, possibly due to consumption of processed foods, definitely in vegetarians and vegans (because it is only obtained from animal products), and possibly because of the addition of folic acid to many foods, due to a complex interaction. Also, malabsorption rises with people over the age of 60 and contributes to loss of motor ability and to dementia. Doctors often overlook this these days although the discovery of this problem won the Nobel prize in the 1920s.