is this dyskinesia or Parkinson’s?

[jeeves19]

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Recently I’ve had lots of excessive movement in my right leg and foot. I’m unsure if it’s dyskinesia as it doesn’t seem to relate to peak dose and can appear anytime. What do you think? Thanks.

[pearlette]

It does seem like dyskinesia ; sort of jerky and irregular 😕

[jeeves19 in reply to pearlette]

Thanks Pearlette.

[park_bear in reply to pearlette]

Agree.

[June2020]

Jeeves19, All I can tell you is, my dyskinesia.is more like I cant sit still, and I have a lot of body movement. it lasts a long time,even standing.Sometimes ,I need to change my Rytary to a lower mg.Then it stops.My leg and foot also act up ,if you dring a lot of water all day and every day , you will feel a lot better! sometimes a tremer can come from other things in your body to.Try to work with your Dr.about changing your amounts.Hope I helped you some! 20/20

[jeeves19 in reply to June2020]

Interesting point about the water 💧. Yeah, this isn’t true dyskinesia which tends to build up due to layering of Levadopa. This irritating foot shit can appear 15 minutes after taking it which is odd as it hasn’t had a chance to get around my system.

[1953bullard]

looks more like dyskinesia to me

[lenamm]

Yep dyskinesia. Mine used to be worse with wearing off and on (biphasic) and then I would get peak also.

[Juliegrace in reply to lenamm]

That is how mine works.

[Maple-st-tig in reply to lenamm]

Do you not experience the biphasic dyskinesia anymore? Would love to know how to make it stop. Thank you.

[lenamm in reply to Maple-st-tig]

I had brain surgery in Switzerland called pallidiothalamic tractotomy 4/19 and 12/20. It’s gone now

[Maple-st-tig in reply to lenamm]

Ah ha. Good to hear that. I’m scheduled for dbs later this year so fingers crossed.

[Zella23]

My husband can get whole body dyskinesia, just leg twisting or head movements. Neuro says it’s Dyskinesia also dystonia and restless legs. He’s been on meds, although low for 9 years and we’re still figuring out whether it’s too much, too little or anything in between. Sometimes when it’s bad another half dose can slow it down but can go the other way and make it worse. Have tried fish oils and CDP Choline but it still appears but not always every day so never the same!

[Juliegrace in reply to Zella23]

I also experience something similar.

[jeeves19 in reply to Zella23]

Thanks Zella 🙏

[Parkie1]

Dyskinesia for sure! At peak dose my leg does exactly the same. PD itself is lack of movement, other than tremour, which is a regular shaky movement

[jeeves19]

Thank you all for that. I’ll approach the hospital for some guidance. Appreciate your support.

[Kevin51 in reply to jeeves19]

I get a hip involuntary movement pretty quickly after taking only 50 mg of Sinemet and it reinitiates after taking more. The neurologist calls it interdose dyskinesia. I currently manage it by delaying the 1st Sinemet to late morning and taking 50mg S every two hours. I start the day with 100mg Amantadine followed 1 hr later by 4mg of extended release Ropinerole. I also take high DHA fish oil with a B Complex. I get to shave and breakfast dyskinesia free but my tremor isn't well controlled until I start the Sinemet. The new subcutaneous LDopa pump may be just what I need as it would keep Ldopa levels constant.

[jeeves19 in reply to Kevin51]

Thanks for your thoughts Kevin. I can’t put off the early morning dose as if I do my neck dystonia kicks in and then all hell breaks loose. I too am interested in the sun-c but understand that it’s expensive and not allocated easily 🤔😑

[Kevin51 in reply to jeeves19]

I was surprised to find that I got enough antiparkinsonian effect from the Amantadine and the agonist to function OK a.m. so I posted since although we all try to optimise meds its not always obvious what works! Hope you find some way to improve things.

I heard 35-40k for sub-c but don't know the breakdown/recurrent costs. It must get cheaper surely...

[Allypally49 in reply to Kevin51]

Parkinsons doesn't cause dyskinesia it's the treatment that does, co-careldopa, rasagiline etc.

[MarionP]

If you find you do need your peak dose of your main medicine you might consider oral benztropine as an episodic adjustment.

[Allypally49]

I don't if this will help you but I had been giving my WWP, who had an ache in her left leg like a toothache, in which she had to stop and rest every so often, also a small jerky movement in her left hand and foot, supplements of 500mg B3 (nicotinamide ) twice a day along with 100mg coq10 also twice a day as a supplement but not to treat these afflictions.

It wasn't until 3 weeks later we noticed they had gone ( and still have ) that we realised it occurred 3 weeks after those supplements started.

No placebo or peer reviewed stuff,so no evidence it is those supplements, but it if works, it works.

Good luck

Let me know if it helps you.

[jeeves19 in reply to Allypally49]

Thanks 🙏

[gingerj]

Hi Jeeves, currently my most troublesome symptom is dyskinesia. For me it starts after my first dose at 5am with mild left leg and ankle movements. By my third dose at 9am I begin shoulder shrugs and head movements too. It's fairly mild compared with M J Fox, but noticeable. By 5pm (6th dose) I can have all over body movements and as the evening progresses it becomes steadily more amplified. Especially when I'm eating. (Don't eat out much now)I am hoping that DBS will reduce or better get shut of this annoying side effect of levodopa.

Does DBS not help you with this? Can't you tweak the settings to help?

Am I being too optimistic in hoping that DBS would help?

[jeeves19 in reply to gingerj]

Well I never had any dyskinesia up until a couple of months ago so I can’t really say although an internet search does claim that DBS can help. The only caveat I’d throw in is that the best site for this is GPi, but I think that 90% of DBS operations place it in the STN. Maybe worth a conversation with your surgeon to see if you can swing him or her around?

[gingerj in reply to jeeves19]

Yeah. No-one j have spoken to has mentioned the GPi alternative. I guess with the nhs you get what your given. I'll see if I can raise it before my surgery date. (Which I haven't yet been given)

[Bittermelons in reply to gingerj]

My neurologist just put me on levo-carbiodopa 50-200er after being on 25-100 for in excess of ten years. in the passed few months I've developed what I'd call severe dyskinesia, a violent rhythmic slamming of my arms against anything from a fork at the dinner table To my mattress. And this was before upping my carbidopa. Have you found relief?

[gingerj in reply to Bittermelons]

Hi bittermelons I was prescribed amantadine for dyskinesia 2 years ago. I take it twice a day, 5am and 12 noon. It does help but has additional side effects. For me, since the first week of taking it and not before, I wake several times a night to pee. I also suffer with constipation now, though I have improved this with diet changes. And most worrying was loss of weight. I'm 6' 1" and dropped from 11 stone to 9 in the space of 8 months. Again I have improved this by eating a lot more and now weigh 10 stone.

My Neurologist said I can take a third dose in the afternoon but I'm holding off for now.

[bassofspades]

try asking the doctor if you can try Trihexyphenidil. Also called Artane. Helps me with the same problem. I just take 3mg, 2 x a day. Good luck.

[gingerj in reply to bassofspades]

Dr Google tells us that amantadine gives the same benefit but with fewer side effects."In a double-blind placebo-controlled crossover study of 39 psychiatric inpatients, amantadine and trihexyphenidyl were equally effective in treating drug-induced parkinsonism, and amantadine produced fewer and less severe side effects."

[bassofspades in reply to gingerj]

Well there you go!

[jeeves19]

strange that this isn’t spoken of/used more widely? Where did you derive the idea of using this drug from Bass?