Hello all. This is my first time posting, so thanks in advance for reading, but I’d be incredibly grateful for any thoughts or advice or if anyone has any experience similar to my predicament. I’ll try and keep the background as brief and succinct as possible.
I’m a 48 year old male. Around twelve years ago, I started with muscle twitches down my left hand side; mainly in my upper left arm muscles, but also in my upper leg, along with left arm aches and pain, and what were defined as ‘ice pick’ headaches. I saw a Neurologist and had a normal MRI scan and was diagnosed with Benign Fasciculation Syndrome, and was started on Amitriptyline for the nerve pain. This worked in the main and resolved the pain, but never did anything for the muscle twitches, and I stayed on Amitriptyline 100mg per day (quite a high dose as I understand it) taken at night time, for the next nine to ten years. However, about three years ago, I felt that the Amitriptyline was making me too zonked during the daytime and could be affecting my head so I weaned myself off them with the blessing of my GP. When I say affecting my head; I’d had some issues from around five years ago, where I was becoming emotional for no reason in conversations, and at work in meetings etc I was suddenly freezing and wasn’t able to speak / think clearly / get my words out. This was a shock as I’d had a 25+ year career by this time in a very senior position and had never had a problem before.
I battled on at work and tried to find coping strategies, but about two years ago, I found I couldn’t sleep at night and was having lots of leg pain and muscle cramps in my left leg as well as very vivid dreams / lots of talking in sleep etc. I carried on like this for about another six months, and then in Autumn 2024, I noticed that my left hand movements had massively slowed down, and I was having some tremors with my left thumb, so I saw a Consultant Neurologist and after her clinical assessment she suspected Idiopathic Parkinson’s Disease and started me on Ropinirole 2mg per day. By this time I’d suspected that Parkinson’s could be the cause as I’d seen my paternal Grandfather suffer with it – he’d been diagnosed in his late forties too. The Ropinirole improved things but it wasn’t sustained so I was upped to 8mg in a morning, and long story short during 2025 I had to have Co-Careldopa introduced as well, and at the time of writing my symptoms are well managed by the meds; I take the Ropinirole 8mg first thing in a morning, along with 150mg Co-Careldopa three times a day, plus a 100mg dose in an evening, and then a modified release Sinement at 10pm. I don’t sleep well but with that dosage regime, I now find that when I wake early before 7am, I’m slow and stiff (still only on left side) but within 20 mins of taking meds on an empty stomach I’m hugely improved. Alongside the above, I’ve also for the last 18 months suffered with extreme urinary issues (frequency and urge incontinence) and constipation, as well as extreme fatigue – especially most often after eating meals.
So given the above, I was officially diagnosed with idiopathic Parkinson’s in late 2024, but due to me needing increased doses of meds to keep movement issues under control, and the urinary etc issues being extreme, my consultant referred me for a Datscan in Autumn 2025, in case this was something else like MSA. To both our surprise, the Datscan came back normal! An MRI has also come back normal, and I’ve also just had an MIBG Cardiac scan and that’s come back borderline abnormal.
So I’m still officially diagnosed with Idiopathic Parkinson’s, but I’ve been referred for a second opinion. I know that if I miss a dose of meds then the symptoms – especially the slowness of movement – come back within a few hours, so the Levodopa meds work like clock work, but everyone is baffled as to how the scans can be normal? I’ll hopefully get more light shed at my next appointment, but I feel in a kind of limbo – the symptoms and meds response are undeniable, so could it just be I’m in the early stages and not yet showing up on scans, or could the Amitriptyline have something to do with the symptoms having taken a high dose for so long, and even though I came off it years ago, it’s damaged something that just now needs Levodopa to resolve?
Thanks so much for reading – I really appreciate your time.
