Writing on the Wall?

Hi Everyone,

Not really sure where to start. I’m 46 and have never had any health problems previously, although I drink like a fish!

I haven’t been diagnosed yet but have had a couple of worrying test results and a number of symptoms that have all started over the past year but in reality one or two may have been present longer.

In January/February of this year I started to notice that I was having issues swallowing, mainly at night. It felt like my throat was tight and I was producing more saliva that usual. There was also an odd thudding/clicking sound when swallowing some of the time. I got GP referral for an ENT appointment but that got cancelled due to Covid. I kind of pushed the issue to the back of my mind and stopped noticing it with all the stuff going on with Coronavirus.

I’ve been running regularly for around 4 years and I have been picking up more and more odd injuries having never really suffered with anything major before. Then, around March/April I noticed that I was getting stiffer and stiffer, particularly in my right leg. It felt as if my muscles were about to cramp or pull whilst running. After longer runs I could barely walk the next day because of the stiffness. In reality, this may have been coming on for a while but it’s progressively getting worse.

I wasn’t too worried until mid-August when I started with widespread fasciculations that have been with me all day and all night since. It’s non stop. That got me worried about ALS, as my Dad has FTD (diagnosed in his 60s). There can be a genetic link between the two and we don’t have a full family history on his side.

To cut a long story short, I’ve had an EMG that picked up fasciculations in all muscles on my right side and in my tongue but no muscle wasting. The neurologist suggested repeating this in 6 months time but in the meantime I saw the ENT consultant about the swallowing issue. I did the barium swallow test last week, which shows that the swallowing muscles are not coordinating properly. The professor doing the test confirmed it’s neurological but didn’t give much away so will have to book in my follow up with the ENT consultant.

More recently (since September) I have noticed a tremor in my right arm at rest and have started fumbling and dropping things- wine glasses, plates etc, whereas before my hands were really steady. My arm often aches after only minimal use.

One other odd thing was a change in my smell nearly 2 years ago- not a loss of smell but certain things started smelling different or less strong. Saw the GP about that but he said it was quite common and probably the after affects of a virus. The smell never returned to how it was before.

Can people with PD have severe muscle twitches in the early stages? The neurologist mentioned something about overlap with MND.

Got a DAT scan and genetic testing lined up so hopefully that will help point towards what is going on.

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Hi @Paul1852, with PD something/anything can trigger PD with me it was the result of a groin hernia operation and so it is not necessarily just one thing in particular. With PD we all suffer in different ways so no two people can say theirs started in the same way. It would appear that you have early onset of PD but it doesn’t mean everything in your life has to change because of it, you carry on as you did before as much as you can and do your best in what ever it is you’re doing. As and when you get an official diagnosis it would be prudent to ask your GP Surgery for details of the local Parkinsons Nurse as these are worth their weight in gold, they are brilliant in the job and will help/advise you all they can. In the meantime adopt a positive attitude, you are not alone on this forum as we are all here to help one another so please feel free to air any more of your concerns.


Thanks Les.

Tough times but just got to keep going I guess.

This was always going to happen at some point but perhaps lifestyle has contributed to an early onset, assuming that it is confirmed as PD.

People always worry about heart disease and cancer but don’t always think of neurological diseases hitting them in middle age.

A stressful event last year may have triggered this but it’s always so hard to be certain.

Kind of still clinging onto the hope that it could be some weird infection but highly unlikely.