u/BiscottiEntire7118

Hi all, in my early twenties I developed what I was told was RLS (restless leg syndrome) when I was switching from Cymbalta to another medicine for depression/anxiety episodes. It started in only my left leg and hip where I would feel a jolt down from my head into my left lower limb, hip calf and foot. It only occurred before bed. It was often but not every night. I was prescribed Requip and it seemed to help but caused next day impairment where I didn’t feel safe to drive, heavy fog almost like I was poisoned. Same with Mirapex. Later around this time I was prescribed promethazine with codeine for an injury and it caused immediate attacks, had to stop it immediately, this also made me feel “poisoned”, terrible increase in symptoms. Doc ordered brain CT which came back normal.

Fast forward to my late twenties the episodes became more frequent and progressed into my upper limbs and neck to the point I would twist myself to cope with the agony of the feelings and muscle contractions. The jolts sometimes cause involuntary jumping of the affected muscle. I was prescribed Gabapentin with no relief same effect from Pregabalin. I also started noticing urinary hesitation and increased urination at night which may or may not be related, unsure. Doc ordered brain and spinal MRI which only shows mild stenosis in my cervical spine.

Fast forward to my mid-thirties and these attacks became pretty much every night and also more often during the day. Symptoms have expanded to having: a sensory aura (feeling like something is misfiring in the head) before they start, hand stiffness where I feel a need to sort of claw my hand, and more upper body impact from the jolts and contractions. Still start primarily in the legs, hip, and feet. I brace myself when a jolt happens otherwise my back sort of thrusts backwards. The attacks ONLY start happening while either lying down or sitting. This year I learned my father has Parkinson’s (action tremor and shuffled gait as primary symptoms which started 5 years ago and he is also almost entirely blind at age 65).

Doc started me on a low dose levodopa/carbidopa trial which is the first thing that seems to be very helpful and without side effects. It kicks in within an hour and lasts up to 3 hours. I take it with lemon balm and it seems to entirely block my attacks, at least 90% of the symptoms.

An attack goes like this:
Each contraction lasts up to ~10 seconds
There can be seconds to ~ 1 minute of relief, then another contraction
It can hit the same muscle or migrate to a different muscle
Sometimes the contraction produces an actual limb movement; sometimes it is simply a sustained tightening
It can continue for hours disabling ability to rest and fall asleep.
It is particularly problematic when trying to fall asleep. No issues staying asleep after falling asleep.
No urge to move the legs, rather a desperation to stay still.
The attack ceases while actively walking.

When attack spreads to upper body now I start doing things like finger tapping, head bobbing, grimacing as sort of a reflex to cope with the muscle tension. Left eyelid twitches also present.

I just got results to a Parkinson’s genetic panel which came back negative, next they’re doing a dystonia panel. Normal iron, ferritin, absorption rate and other labs also normal. Ceruloplasmin (copper) normal. Waiting on results to heavy metal lab which seems to be taking quite awhile to get it back.

Neuro is calling this either “Severe RLS with dystonic features” or “dopa responsive dystonia” for now and we are ruling out a form of Parkinson’s or parkinsonism. Common genes for causing DRD came back without mutation.

I’m happy the medicine is helping however I want to understand why this is happening to me. My worry is neurodegeneration and ruling it out. I’m being referred to an academic movement disorder specialist. What do you think the next steps should be as a mid-30s person who doesn’t want this to get any worse? I’ve had to explain to docs that it truly impairs my ability to rest, people can’t sleep with me in the bed because they tell me I “appear possessed” without medication. Before the new med I would literally moan and yell out from the attacks.

This year I’ve been getting attacks more frequently earlier in the day. Years ago this was very rare to happen. Please let me know if this aligns with any known condition other than “severe RLS” or “DRD”. Thanks

Disclaimer: I am not asking for medical advice I am asking if anyone believes these symptoms correlate to any known condition and I will not discern any responses provided as actual medical advice.

36M. Father has Parkinson’s disease diagnosed at age 60.

I started having severe RLS around age 25 (I think more around 23). Now in my 30s it’s more nights than not, almost every night, and it’s not just my legs but specifically and more frequently my left body becomes what I “think” is dystonia but I cannot entirely explain what happens. It shifts between a “locking up” feeling to very quick jolts like electric shocks which cause a mix of involuntary movements and a voluntary urge to move to get rid of the discomfort. When it gets bad, I feel it in my left arm, shoulders, neck and my eyes as well. Happens mostly at night but every once in awhile it happens anytime I am at rest, laying down, car rides, flights, any time of day. As for legs, my father actually said it this way, “like a thousand mice trying to escape your legs?”, he said it was one of his first symptoms. I learned this from him about a month ago. That’s definitely one way to put it for me too. During the day my left hand sometimes starts to stiffen up, or lock up, as well. Around 28 I started having a lesser sense of smell. and difficulty emptying bladder also especially at night. Also have morning stiffness ever since I was a teen. My night vision is also really bad but I don’t know if that’s related or not however my father is also now in entirely blind at 65, so with this full picture, a genetic factor here seems very possible to me.

Does ANYONE have similar symptoms to this? I’m getting a parkin genetic panel soon but struggling with getting insurance to cover it. My neurologist just started me on carbidopa/levodopa at night and so far it’s helping A LOT. Before this I had tried Requip/Mirapex (cognitive dysfunction side effects, can’t think or drive during the day when I take it at night, minimal relief) and gapapentin/pregabalin (only made me feel dumber the more I took it, nearly no relief).

Labs are all normal, iron/ferritin/B vitamins, normal MRI, normal EMG I asked neurologist about getting a DaTscan next but they said it could “muddy the picture” of what it actually is, not sure what that even means, didn’t think to ask at the time. Maybe because they think it could be PD but don’t want to have to tell me at a young age. Don’t know. But the whole point is I WANT to know. They did however agree to ordering the genetic panel.

All this said, from my recent talking about these issues with AI models, they are leaning into “young-onset dystonia-dominant parkinsonism”, more specifically a PARK2 or GCH1 inherited mutation causing a dopamine system dysfunction, but I’d really like to get some opinions here too, thanks.

36M. Father has Parkinson’s disease diagnosed at age 60.

I started having severe RLS around age 25 (I think more around 23). Now in my 30s it’s more nights than not, almost every night, and it’s not just my legs but specifically and more frequently my left body becomes what I “think” is dystonia but I cannot entirely explain what happens. It shifts between a “locking up” feeling to very quick jolts like electric shocks which cause a mix of involuntary movements and a voluntary urge to move to get rid of the discomfort. When it gets bad, I feel it in my left arm, shoulders, neck and my eyes as well. Happens mostly at night but every once in awhile it happens anytime I am at rest, laying down, car rides, flights, any time of day. As for legs, my father actually said it this way, “like a thousand mice trying to escape your legs?”, he said it was one of his first symptoms. I learned this from him about a month ago. That’s definitely one way to put it for me too. During the day my left hand sometimes starts to stiffen up, or lock up, as well. Around 28 I started having a lesser sense of smell. and difficulty emptying bladder also especially at night. Also have morning stiffness ever since I was a teen. My night vision is also really bad but I don’t know if that’s related or not however my father is also now in entirely blind at 65, so with this full picture, a genetic factor here seems very possible to me.

For those here with RLS, does ANYONE also have similar symptoms to this? I’m getting a parkin genetic panel soon but struggling with getting insurance to cover it. My neurologist just started me on carbidopa/levodopa at night and so far it’s helping A LOT.

Labs are all normal, iron/ferritin/B vitamins, normal MRI, normal EMG I asked neurologist about getting a DaTscan next but they said it could “muddy the picture” of what it actually is, not sure what that even means, didn’t think to ask at the time. Maybe because they think it could be PD but don’t want to have to tell me at a young age. Don’t know. But the whole point is I WANT to know. They did however agree to ordering the genetic panel.

All this said, I’m preparing for the possibility this is YOPD but I’d really like to get some opinions here too, thanks.