Alien limbs/involuntary slow movements - Dystonia Society

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Alien limbs/involuntary slow movements

Lily41 profile image
4 Replies

I am trying to find anyone who experiences symptoms similar to mine. I have not been diagnosed with anything or had any tests/scans. I went to my GP about 4 years ago with slight resting tremor and fasciculations body wide which were dismissed by the neurologist I then saw as nothing to worry about. Things have got worse but I don't seem to have other PD symptoms. Apart from the tremor what I do have is the involuntary slow, and I emphasize slow, independent move up or down or sideways of odd fingers, arms, hands and legs when sitting. If I stand still both arms will float upwards after about 10 seconds and then come down again. The movement when sitting is not constant but occasional. My finger (usually forefinger or thumb will tremor). If stressed I'll shake all over. I don't want to back to the GP and be dismissed again hence my search for a kindred spirit or explanation! Thank you for any thoughts.

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Lily41 profile image
Lily41
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4 Replies
Tiedye profile image
Tiedye

Welcome, lily I’m so sorry for your experience with lack of support and answers from your doctors. Unfortunately, this is not uncommon with us dealing with movement disorders, my heart goes out to you. But if things are getting worse you may want to keep a log of your experiences, and even video to help with notes for an appointment with a movement disorder neurologist. ( not just a neurologist, there’s a difference) I have generalized, dopa responsive & myoclonic dystonia & essential tremor. My movement is slow & twisted but only when I’m moving, sometimes I have quick jerking in my arms or legs, head while sitting or my hands will stiffen in claw position while sitting. We all experience things differently. There are so many movement disorders & a lot of them can coincide together. I did find some info maybe it will help.

Athetosis- is a continuous stream of slow, flowing, writhing involuntary movement s. Usually affects the hands & feet.

PD-cause bradykinesia the impulses from the basal ganglia are insufficient to prepare & execute the commands to move. Other factors that contribute to bradykinesia in people with pd include muscle weakness, rigidity, tremor, movement variability.

Rest tremor-is a repetitive back & forth movement of any limb, or the jaw,head or trunk, which occurs when that part of the body is not actively moving.

Common types of tremor include pronation- supination of the forearm & flexion-extension of the fingers.

I don’t know what you have, but sounds like it involves the nervous system ( movement disorder) or maybe a side effect from a new medicine. Just, want you to know your thought of and we’re here for you. Doctors can be daunting many of us have been down that road sometimes many dr’s but there are great ones out there. But, gather your info write your symptoms down to help them figure things out, because in the appointment a lot of times we leave out critical info very overwhelming, a list of your symptoms and your questions in a simple format. Sorry, I’m rambling, keep your chin up your stronger than you know and don’t deserve to be dismissed. Let us know how your doing. Everyone is going through something, it’s nice to have the support & this is a great group!

Lily41 profile image
Lily41 in reply to Tiedye

Hi Tiedie

Thanks so much for your kind reply. I looked up my old records and the neurologist I saw diagnosed dystonic tremor. I don't have jerky movements they are always extremely slow. Anyway I saw my GP last week (she didn't seem concerned) and am awaiting a neurology appointment. I am not expecting anything much to come out of it but I would really like a brain scan. I will post again when I get a verdict! Very best wishes to you. Lily

BlanketTime1 profile image
BlanketTime1

I agree with tiedye about keeping a symptom log. even if the doctors are being arrogant jerks, it will help you to see any patterns. for instance, I noticed when I ate junk food, my dystonia worsened, so I cut it out. same for overdoing things. when I was eating badly, I didn't have involuntary movement from resting, but if I reached for something, my arms would wobble and waver out of control. it was scary and awful.

I also agree about the neurologists. they are notoriously inhuman, but keep fighting for diagnosis and treatment. they don't have to live with your illness like you do. stay strong.

Lily41 profile image
Lily41

Hi Tiedye and Blankettime1

I had a brain MRI which was apparently normal for my age so the neurologist stuck with his diagnosis of Benign essential Tremor/Dystonic Tremor. However as he had never seen drifting/floating limbs before I don't have much faith in him. On the other hand I am obviously not "suffering" in the same way as a lot of other people and although my tremor is irritating I am not badly affected and so have decided just to get on with things. I will ask the GP for blood tests again but I'm not rushing. I do get the most painful cramps/spasms in my thighs at night on occasion but that could be down to any number of things.

All the best to you and here's hoping research is continuing apace to find relief for everybody affected by this distressing and very unpleasant condition.

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