This is my first post in the forum. I wanted to hear from people with PSP, as I believe I might have it.
In April 2017 immediately after a week of lower back pain I started experiencing several symptoms, including feeling off-balance, pins and needles, missing letters when typing, muscle twitches and jerks on and off all over, bee-sting sensations, tiredness, bloodshot eyes, difficulty opening eyelids after sleeping. This led to a lot of worry and hence I stopped doing a lot of the activities I had previously enjoyed doing. The symptoms would vary over the following few weeks and then almost disappeared for a few weeks between June and August. Then, after another week or so of lower back pain, some but not all of the symptoms reappeared, with the jerks worse than before. In October I started to experience a constant high pitched whine in my ears/head that, curiously, would worsen if I stuck my jaw out.
I eventually saw a neurologist in December and I was diagnosed with a functional disorder. I read stories of patients with functional disorders but none of them seemed to match what I was experiencing. While searching online I stumbled across a page on FTD and PSP, and saw that the list of symptoms were a much closer match to what I had been experiencing. From then on I have been more or less convinced that I have PSP or something like it. I wrote to the neurologist with my concerns but did not get a reply.
I had an MRI done in January which came back with no significant anomalies other than some neck wear and tear, but I had read that early stage PSP would not likely show on an MRI scan anyway.
Since then my balance (which has been by far the most concerning symptom for me) has worsened, especially in the past week, again preceded by lower back pain, and also some upper back pain this time. If my balance continues to worsen then I think it won't be long before I start to fall. I'd be very interested to hear about how other peoples balance problems have manifested themselves. For me, I am always looking to hold on to things or lean against any table, wall, door frame that happens to be there because I just don't feel comfortable standing with no support, and my ability to stand for any length of time has gradually worsened over the past few months. I now try to plan my activities and avoid anything that would involve long periods of standing, e.g. sports events or waiting in queues. Recently I have also found myself leaning one way or another when seated, even though I do not feel particularly unbalanced. I think my speech is now also slightly affected, with some slurring of certain words with sounds like "sh", "s", "f". The tinnitus has been continuous since it started about ten months ago. I don't always notice it, but I can share confirm it is still there by sticking my jaw out, which makes it much louder.
Any thoughts or feedback would be very welcome.
Thanks very much for your time.