Query re early symptoms

Hi there. I’m reaching out regarding symptoms my husband is showing. He is not diagnosed nor have we even been to the doctor yet - I have scheduled an appt with his GP in May as a first step. My husband is about to turn 50 and as part of testing done during my current pregnancy, we found out that he is a carrier of Gaucher disease, which confers for him an increased risk of developing PD. I thought nothing of that information until recent changes I’ve seen in him. I’ll try to list them because I would love to hear from those of you with experience as to whether this sounds like your early symptoms.

  1. Recently he started exhibiting repetitive mouth/jaw movements at rest. I’m not quite sure I would categorize them as a “tremor” because I think of a tremor as faster in nature. To describe it, whenever he is mouth is unoccupied (though it is far worse when he is relaxed or tired) he almost rhythmically slightly opens and closes his jaw. He also sort of cycles through a series of other movements with his mouth, which to me almost feels like an effort to stop the first movement, such as lateralizing his jaw, biting his lips, pursing his lips, and more recently he does this thing where he almost like sucks on his tongue. I’ve pointed this all out to him and he says he’s sort of aware he’s doing it but not always. It’s almost like his mouth/jaw area just never stops moving when he’s relaxed.

  2. Another thing I’ve noticed is, similarly when we are laying in bed watching TV, he is incredibly restless. He’s constantly repositioning his legs or his arms, or scratching his head or his face. He just has a very hard time settling his body down.

  3. This is a strange one so I’m very curious to hear if this resonates with anyone - similarly now when we are laying together, I notice a very very strong pulse in his extremities. Like I can feel a throbbing pulse in the tips of his fingers when he has his hand on me. I haven’t asked him about it but I do notice he does things like sort of bends and curls his fingers under from time to time, or puts them behind his head. Does a tremor start like this, as a strong pulsing sensation?

  4. The last change I’ve seen in him is really bad night sweats, particularly from his head and upper body. His pillow and his side of the bed are almost always wet now when we wake up.

I’m ready to face anything together with him. I’ve lost both my parents to terrible illnesses and I am nothing if not a realist. It’s just so hard to google symptoms and try to figure out if people have experienced these, so I figured I would ask this wonderful community.

Thank you in advance.

Hi and welcome to our forum, @MEM82. As you have rightly said, this a wonderful community of supportive, friendly and informative people and I hope they will be along soon to tell you about their own experiences of being diagnosed.

First, of course, the only people who can diagnose Parkinson’s is your GP and Parkinson’s specialist. Start with your GP and take along all your questions and observations. We do have a very good guide here: Do I have Parkinson's? | Parkinson's UK which could prove useful. There are many symptoms and everyone’s experience will be different, but the most common signs are tremor, rigidity and slowness of movement.

I totally understand your fears at the moment. Your own experience has been with illness and loss, and you may be worried that there is more in your future. It’s a lot to think about, but unfortunately there is no short cut and the answer can take a while. In the meantime, our members here are here for you, as is our Helpline team who you can ring on 0808 800 0303. Our advisers are an invaluable source of information and support.

Please take care,
Forum Moderation Team

I recognize some of the symptoms you describe:

“repetitive mouth/jaw movements, almost rhythmically slightly opens and closes his jaw. lateralizing his jaw, biting his lips, pursing his lips, like sucks on his tongue…incredibly restless. … constantly repositioning his legs or his arms”

The mouth movements sound like orofacial dyskinesia.
The restlessness sounds like akathisia but check the symptoms of restless leg to see which description fits best.

I would suggest you check the side effects of any drugs he may have been taking as early recognition of drug-induced movement disorders is crucial to prevent them becoming permanent.

You may not find health professionals queueing up to give you information which could result in them being sued.
Dyskinesias are among the commonest side effects of levodopa.

I had pAIN in my right arm before the tremor emerged & this also worSt arm for dyskinesia and stiffness.

I found a couple of case reports mentioning finger-curling

Possible sertraline-induced extrapyramidal adverse effects in an adolescent Wang LF, Huang JW, Shan SY, Ding JH, Lai JB, Xu Y, Hu SH.Neuropsychiatr Dis Treat. 2016 May 6;12:1127-9.

On the 20th day of sertraline treatment, the patient exhibited restlessness, irritation, and disturbed behaviors… as unprovoked grinning… the patient still experienced facial spasm, tight arms, and fingers curled inward. He was unable to stand or sit still,

34 Case report of sertraline exacerbation of tics in tourette’s with OCD Paramlall M, Tyagi H Journal of Neurology, Neurosurgery & Psychiatry 2020;91:e22.

Three days post Sertraline …suffering from muscle twitches… His symptoms evolved to include: facial tics (masseter spasms, blinking, puffing of his cheek, expelling air through his lips, forehead wrinkling), complex thoracic and upper limb tics (violent head turnings with a hand grabbing motion, shrugging shoulders with violent right arm movements imitating a severe precordial thump, upper limb shaking with spasms and episodes of punching outwards and upper limb flexion with fingers curled as if he is holding an object such as a gun), Lower limb tics (hip gyration, kicking and occasional foot tapping) and vocal tics (simple and complex).

Night sweats mentioned in this article:

The ‘extreme’ side-effects of antidepressants By Lesley Ashmall 19 October 2016 BBC Victoria Derbyshire programme

Withdrawal symptoms…“I couldn’t walk and was experiencing the most horrendous sensory sensations. My muscles were burning, I had facial twitches, terrible night sweats and numbness on my forehead.”

This is a previous post of mine describing the onset and early progression of my movement disorder:

More information on akathisia:

Akathisia Author: RxISK Medical Team Last updated: 2018