Do any of you with PD have fasciculations?
I have been scared to broach this for over a year now. I have symptoms of PD but I also have fasciculations like ALS.
Please, I’m scared, please tell me the truth but please take in to consideration that I’m very scared. My Dad has PD. My maternal uncle had ALS. I’ve avoided genetic testing due to anxiety.
I think I might have both PD and ALS.
I’m 46.
I have ALOT of fisculations. When it first started 6 years ago I was scared too. I definitely have PD not als.I believe it’s pretty common in PD as well. My muscles would twitch all over but especially on my arms and legs..it was quite fascinating to watch-quite different to a tremor. I have them less now.
Thank you so much. ❤️
I get muscle twitching sometimes spasm like in my quadriceps sometimes in my back. Not sure if that's what fisculations are.Sometimes also in my abdomen but usually connected to constipation. I hope you find some relief.
I’m getting this in my right hand if this is what it is. I have like a severe spasm, cramp and my fingers are all bent and paralyzed
Progression slower for those with the LRRK2 mutation than for those without:
jamanetwork.com/journals/ja...
" The estimate (SE) of the rate of change in the Unified Parkinson’s Disease Rating Scale III motor score per year among those with the LRRK2 mutation (0.689 [0.192] points per year) was less than among those without the mutation (1.056 [0.187] points per year; difference, −0.367 [0.149] points per year; P = .02)."
CC,
No one on this forum can diagnose based on your symptoms and fasciculations. When do you have an appointment with your MDS? However, I have read that fasciculations is an MSA symptom. Hope and pray I am wrong!
I would never ask anyone to “diagnose” just asking for personal experience
I get these too. Still not diagnosed with PD. Googled them: "A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers. They are common, with as much as 70% of people experiencing them. They can be benign, or associated with more serious conditions."
A doctor told me, “sounds more like ALS”. I almost slid out of my chair. Thank you for sharing that you have them too.
My doctor's PA said they could mean nothing.
I’m detailing my own post to bring up oxalates. I was reading about them looking for a link to fasciculations or neuropathy but hashimotos was mentioned. Everything causes hashimotos! I’m actually wondering if I might have it. Have you posted your symptoms or diagnosis? What a web this all is
You are wondering if you have Hashimoto's? Are you hypothyroid?
How often do you have them. Before my HWP was officially diagnosed he sometimes felt what he called internal tremors, which sounds a bit like fasciculations. When he is balanced on meds and not too stressed it doesn't happen as much.
Before diagnosis with PD I used to get internal tremors in my chest and head. I thought I had a heart problem. Then they started running down my arms. That’s when I thought PD or epilepsy. My internal tremors have gone away. I’m on Azilect. Maybe the Azilect made the internal tremors stop?
I’ve had fasciculations since before Azilect.
Ironically since I just posted this, today I barely had any. First day like this in months! I just started using a rebounder. I wonder if there is any correlation.
For definition and video, see:
me-pedia.org/wiki/Muscle_fa...
I first noticed them in my calf muscles18 years before diagnosis with PD. My doctor sent me for a blood test. It didn't show anything interesting. Every few years I notice that I still have them, but they don't cause me any problem.
Thank you for the videoLooks exactly like what I have but they pop up all over. It’s reassuring to hear you have them too.
I had these for years , before PD. I took myself to a neurologist. He explained why I didn’t have ALS:
1. The fasiculstions were widespread and not localised to one limb
2. Patients who have it present with weakness and muscle wasting before the fasiculations appear. The fasiculations come later on.
Hope this helps 😊
Howdy CCYep I get em, not all of the time, but regular enough
TwitchingEspecially in the years before I was diagnosed with PD, I had that problem, primarily in my hands, and then arms. I didn’t know what was wrong, and, like you, suspected ALS! My GP wouldn’t comment on any explanations for my symptoms. It was nearly 10 years, after symptoms started, that we moved from a small town, to a big city, where there was a regional hospital, with neurology specialists, that I was finally diagnosed with PD. So, I certainly can understand how you feel! I seldom have twitching nowadays, since I’ve been taking Sinemet medication! I hope you get a definitive answer soon, where you’ll know for sure! Both PD and ALS can be hard to diagnose, from what I’ve read in medical journals!
Yes, I get them, especially in my hands.
I get them occasionally on my legs and arms. They don’t last long and is no problem compared to the other symptoms.
I got them a lot after diagnosis. I have pd 100% and I find those twitches still come and go but more when my anxiety is high
Video of my right hand from a few years ago (it's private on YouTube). You can't always feel fasciulations. Notice how fibrous the thenar muscles are? It's loss of the fat layer ahead of muscle atrophy.
God bless the people who share their life experiences publicly and help us recognize when we need to be concerned. Constant worry was worse for my health than having factual information.
Reflex tests are the best way to separate neuromuscular disorders from other neurological disorders. Reflexes are hyper in MS/ALS and normal with PD/MSA/AD.
Hugs CC, we got you ❤️
SE
Thank you for the video. Looks just like what I experience popping up all over. It was a Tele visit doc appointment that said “sounds like ALS”.
My in person neuro was very dismissive.
Do you have any recommendations for how to check reflexes?
My current belief is that all people with ALS have fasciculations and some PWP do.
Maybe the PWP who have them have a greater risk of ALS. Maybe it’s prodromal ALS which may or may not manifest.
You don't need a reflex hammer to check the patellar reflex. But I have a better idea - check the Hoffman sign. That's what neurologists do when they are actually looking for Motor Neuron Disease.
SE
I was having muscles twitching on my neck and arm at time of diagnosis for PD and i was assured it was Parkinsons.....twitching stopped with madopar and only comes back briefly on rare occasions.....i did find it a bit worrying at the time
Thank you Jeff. That is reassuring. I want to remain hopeful while still residing in reality. I almost posted that my muscle twitches had mysteriously disappeared but they are back with increased tremor. This disease is unpredictable!
hi. Someone just forwarded your post because I am concerned about the same. I haven’t been diagnosed yet but have restless legs, internal vibrations and now twitching in leg, and twitch in eye this afternoon! I had thought PD because of family history, but am fearful of ALS also. You posted 6 months ago, I was wondering what you learned and where you are on your journey.
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