Choking at night

Hi everyone. As I type, my husband is driving me to a first doctor appointment as I suspect I have Parkinson’s. My mum has it but was 78 when diagnosed … I’m 59. Firstly, can anyone tell me what to expect test wise? Doc told me I may be referred to neurologist. Symptoms are a frequently trembling lower lip on left side, shoulder aches and pain on left side, insomnia, stiff joints, afternoon fatigue and more worryingly, a choking night cough, where I can’t breathe until the phlegm clears, and it’s streaked with bright red blood (I suspect from throat with the severe coughing). Happy to read any advice … very worried at moment :woman_facepalming:

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Sorry to hear your distress. A Drs appt sounds good. My husband was diagnosed at 56. Stiffness of joints …his right arm did not swing for years and a bit of a tremor were his symptoms. He coughs at night a bit but it sounds like you need to get a thorough check out. Scary as a diagnosis is, somehow it is good to know what is causing the issues and then getting the correct medication and help becomes a positive step.

Hi @Barnsleynanna1 . That choking does sound worrying!

I was only diagnosed with Parkinson’s a couple of months ago (at 67) and have some if the same symptoms (lefft shoulder stiffness, some shaking) but my choking problems are only when I’m eating, and sound much milder than yours!

As for tests, my impression is that the most important one is simply an experienced neurologist looking at you! My guy asked me to take my shoes & socks off and walk across his office. Left arm not swinging quite naturally? Left foot coming down to the floor a bit too … square on? That sort of thing.

There are brain scans you can have after injection with marker material - to check how the brain is working. But not in my case - not yet, anyway!

Hope the GP appointment went OK. Any more info?

Hi everyone! Thank you for your replies :smiling_face_with_three_hearts: my gp has referred me to a neurologist for further investigation. GP thinks the choking may be down to acid reflux and not related. While he agreed that the lip tremor, stiff shoulder arm, fatigue are typical of Parkinson’s, he did the forehead tapping test and tested for cogwheeling (not present). I’m happy to be referred as it seems the two tests are not always present in early Parkinson’s. I have noticed I’m slower moving around and also have difficulty sleeping … my appetite is much reduced and I’m stiff when getting up out of a chair. I’d be interested to hear what your earliest symptoms were?

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I’m a little younger than you, at 57, and at the same stage in the diagnostic journey.

I have a referral appointment, but it’s months away, and meanwhile I thought I’d see what info I can find about the diagnostic process.

My earliest symptoms (if it is Parkinson’s) are a hand/arm tremor, followed by hand stiffness (in just one hand) so severe that it doesn’t work at all now.

I just looked up “cogwheeling”, but what’s the “forehead tapping test”?

GP asked if my handwriting has shrunk - I don’t write with the affected hand, and my other hand is fine. I think loss of smell was mentioned somewhere - I haven’t lost my sense of smell.

Hi all,

My husband was 41 when he was diagnosed and he is 60 this year so its been a long old journey and one we are still on!
First thing I will say is there is no actual test for Parkinsons…Essentially if you present with certain symptoms they will narrow it down and ultimately they will most likely try a synthetic dopamine ( like Sinemet) if the symptoms are markedly improved they then it must be a dopamine deficiency - therefore Parkinsons.

Second thing I will say is Parkinsons is unique to each person. My husband has never ever had a tremor? Even now 19 years in and still no tremor. His first symptom was just a slowness in one arm and then a slight limp, micro writing etc. So please try not to compare and try not to think that you will get the “stereotypical” symptoms of PD - you may not.

Third thing I will say is…if at any point you are not happy with the information you are getting, or the medication makes you ill - whatever it is then go back, again and again… Change neurologist if you have to & make sure you have a good GP too!

Parkinsons doesnt have to be a life sentence- Dont get me wrong if it had a face Id beat the living daylights out of it! Lol but if it is PD the medication nowadays is good and there is more than one drug option so if you don’t get on with one drug you can try another.

Wishing you all the very best