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Hi,
Hope someone can help with some guidance, please. I’ll try to keep it brief. I’m a 53 yo male in reasonable fitness.
About 9 years ago I noticed my voice would ‘clam shut’ at inopportune times. Think strangled/strained. Often when speaking in public, on the phone, or even ordering a Big Mac. It’s got worse over time. I’ve since ‘self-diagnosed’ as spasmodic dysphonia AD type. Stress makes it worse, but sometimes my daughter points it out at family mealtimes, so I don’t think it’s psychogenic. On rare occasions, when it’s really bad, I basically cannot talk for 5-10 minutes. I’ve lived with it without getting a formal investigation, partly because I’m embarrassed about it, and partly because it comes and goes. I developed some coping mechanisms a while back, like clenching my abdomen and forcing air through. That soon stopped working. Some words seem harder to say than others. In real-time, I try replacing words I have trouble with, eg: ‘correct’ instead of ‘yes’, or ‘oh’ instead of ‘zero’.
The speech gets swallowed on the e vowels, I guess. I work in a pressured sales environment and have to present to 200+ people at times, and I get anxiety not because of the audience, but because I don’t know if my voice is going to work or not. I know many people don’t, but I used to love public speaking. It sucks. I often use the excuse that I have a cold when people ask about my voice, particularly on the telephone.
About 7 years ago, I noticed I had vision trouble, mainly when crossing the road. Scanning left and right to avoid traffic, I noticed that my eyes seemed to be ‘floating in treacle’. One left-to-right scan is fine, but two or more and the eyes lose co-ordination. End result: double-vision and a dangerous situation. I now overcome this by moving my head rather than my eyes. It looks a bit odd but it’s safer. When tired it also interferes with TV watching: I have a piece of tape handy which I put over my right glasses lens to obscure that eye. Back when it started, I saw my optometrist and eventually had an MRI to test for nerve palsy or tumor, which came back negative.
Now, up to date: last week I was walking in the park, and for some reason my attention was drawn to my right arm. It was clear that my right arm hardly had any swing. It just dangles. The left is ‘normal’. I’m left-handed. I watched other people walk and saw equal arm swing and I wasn’t happy.
I then Googled (of course!) and joined this community. I also found a discussion about finger tap test. To my horror, I didn’t do too well. My left finger tap is fine for 45+ seconds, but my right stops working after about 12 seconds. It’s like the thumb and forefinger gradually clamp shut. If I prise them apart, I can continue to tap for a few seconds before they stop again. I was astonished.
I have average smell sense and no resting tremor.
I think I may have RBD though. I had a dream last week where I was pointing to a whiteboard in my sleep. On sudden wakening, I found my arm was stretched out and pointing to the ceiling. I kick in my sleep a bit as well, and I’ve pulled a back muscle a couple of times (ow!) when my left arm jerked violently to the right during sleep. It’s not hypnic jerk – I know what that is. Various muscles twitch a bit but I actually find it quite comforting when I hear my fingers twitch under the pillow! Not sure what’s going on there.
I also have occasional trouble walking down stairs where my legs suddenly feel about to give out. Walking upstairs is fine.
If you recommend I see my doctor, could you please suggest some clear clinical insights or precedents that I can raise? It all sounds like a ‘rag bag’ of complaints and I don’t want to waste NHS time. I know many of you on this forum have significant challenges which are much worse than mine, but hope someone can join the dots together, if there is any correlation.
Many thanks
Hi Speaker, I am pretty new to all this myself as I have recently been diagnosed. From what I haved learned everybody has slight variations on the core symptoms of PD but from what you have described certainy gives you enough ammuntion to go to your doctor and insist on a neuorologist referral. It can take time though on the NHS. I was lucky enough to have private health care with work and the whole process took less than a month. That included consultations, MRI and finally a DATscan to confirm my diagnosis. My main symtoms are, no left arm swing and loss of dexterity in my left hand and quite bad muscle rigidity especially in my neck which is a total nightmare.
Do yourself a favour and get to the doctors and good luck
Hi Speaker,
As Wildrover says get to GP and request a referral to neurologist. The dat scan is the main scan that will indicate loss of dopamine.
I'm 52 and was diagnosed last year. The crunch came when I mentioned dragging my leg to GP. Other symptoms before that were lack of arm swing, neck pain and stiffness.
It can only be diagnosed if you start the process. Self diagnosis will only stress you out.
Hi Speaker,
When you go to see your GP don't get fobbed with "You're too young for it to be PD". There are plenty of PWP decades younger than You and I.
Diagnosis can take a while because as yet there is no one test to give a conclusive yes or no to PD.
Don't lose sight of the fact it might not be PD. Let the Doc's check it out to see what is what.
Best regards,
Tractorman.
I can think of several conditions that could produce the symptoms you have, without giving any weight to one or the other.
The first thing you need to do is tell your GP your symptoms without suggesting a diagnosis, and if you can, ask for a neurology appointment.
The second thing you need to do is stop googling your symptoms and self diagnosing, because it's almost always wrong. It's for a neurologist to decide what might be going on.
Even neurologists can be wrong in their diagnosis. GP thought OH may have MS so sent them to a neurologist with no expertise on Parkinson's. Take care to whom your referral is. 20 years ago the internet was not as available as it is today. Google may frighten you but it is a useful tool sometimes.
Hi,
For what it's worth, I wish I had gone to the GP / neurologist so much sooner than I did. Brains are tricky stuff so getting a referral to somebody who's studied them is, as everybody has said, the only way forwards (Google Doc can be a scary creature :-)
As much as I was devastated by the diagnosis of Parkinson's, I felt a vague sense of relief at understanding what was going on and getting information on how to manage my symptoms more effectively than: sitting on my hand, pretending that my shoes hurt and drinking wine when all else failed. Whatever is causing your symptoms, actual knowledge is the best way to manage them.
I'd write your symptoms down objectively and without suggesting any conditions, I'd also focus on things such as whether there's anything that improves your symptoms - or any other patterns that you notice. And if you haven't talked to anybody about this, I'd do that too. Google Doc combined with keeping it all inside your own head is a fairly bad combination.
Take care ( and visit your GP)
J
Hi all. Many thanks for the replies. I know Googling things isn't the best approach. I'll take the advice and put some sort of diary together and document it all more clearly, any patterns, anything that makes things worse/better, etc. I think your kind words have helped me take this more seriously and will go to my GP when I have something more tangible to discuss.
Thanks again.