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.