Twitching toes

[Moonwalker1967]

Hi,I have not been diagnosed with Parkinson's. I am 55 years old and had RLS and periodic limp movement disorder since childhood. My kids have the same problem.

I have recently come Pramipexole after taking it for over 30 years due to augmentation. Now on Pregabalin 150 mg.

I have started grinding my teeth very badly (so do my kids) and have now noticed my toes twitch when I am relaxed in bed and trying to go to sleep.

Could this be the first symptoms of Parkinson's?

I can only stop twitching by holding my toes or putting something heavy on top.

Thanks in advance for reading this and for any ideas.

[Bolt_Upright]

Do your toes on both feet twitch, or only one foot?

Have you talked to a movement disorder specialist?

Any other symptoms?

Good luck and may God bless you.

[Moonwalker1967 in reply to Bolt_Upright]

Thanks for looking into this for me. No movement specialists in the UK, that's where I live. They don't exist here.Had an appointment with the neurologist last August, however he did not do any form of examination!!! Just asked about the RLS and prescribed Pregabalin.

It's mainly my right toes, always only on one side. I have noticed only getting this when lying down. Teeth grinding also only on my right. I do clench my teeth as well.

Other symptoms: PLMD, RLS, heavy legs, muscular pain after kicking all night, blurry vision at work when sitting down and staring at the computer for 7 hours (I work a 40 hour week),

IBS ( since childhood), anxiety.

I sometimes wake up hitting myself. As I have had RLS all my life I sleep alone, as I don't like anyone near me.

Oh, one last thing I have noticed. I get bad sense overload when there is a lot of lights, people and noise which will result in a migraine. Strange 🤔

Thanks for your help.

[Bolt_Upright in reply to Moonwalker1967]

We have a Zoom call starting in just under an hour. MBAnderson hosts and we talk about PD and other stuff. You should join us. Everybody is nice and would love to chat with you. us02web.zoom.us/j/833522248...

Saturdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Bolt_Upright in reply to Bolt_Upright]

Waking up hitting yourself sounds like REM Sleep Behavior Disorder. That is what brought me here. I am working on stopping RBD from progressing to something worse. I would write more here, but will wait to see if you join our call so I can just tell you in person.

[Moonwalker1967]

Thanks for having me in the zoom call. Sorry I couldn't stay longer as I was rushing out for the church service. Thanks so much for your messages and efforts.

[Bolt_Upright in reply to Moonwalker1967]

You were on the call? Please join again soon. Good luck and may God bless you.

[Smokeypurple]

We do have Movement Disorder specialists in the UK but they are not numerous and have many 'gatekeepers' who need to see the need to refer on.One of the issues is also that for a Parkinson's diagnosis the following NICE guidelines are followed. I'm pleased they exist but if you look at 'Diagnosis' you will see that the criteria do not cover symptoms we know are evident in the prodromal phase.

Sorry to have missed you on zoom - I had to join late. Another time

[Gallowglass]

I have spasms in which my toes curl or clench involuntarily. Not all OD patients have this. These are temporarily relieved by my PD med carbo dopa/levo dopa. I also take a full dose of magnesium malate at bed time and nettle tea which seems to help.

[gomelgo]

How do I sign up for the zoom please?

[Ghmac in reply to gomelgo]

I think the zoom address is listed above