2 Years Later

Hey Everyone, I'm 39

So, two years ago with tremor, spasms-a-plenty, a weak left hand/arm, a destroyed sleeping pattern and weird sweating issues, I joined this forum. From the start, given my family history and medical background, I knew I had early PD. Though, I was what they call 'pre-clinical'. 

Since then I've seen 3 'top' neuros who spotted clinical weakness of my left side, hyper reflexes in my whole body. I've had a clear lumbar puncture, clear nerve conduction studies and clear MRI. Initially I was told I had 'benign M.S.'- not so benign as it kept getting a little worse and the LP was too clean. 

Now I await a DAT scan- which they previously didn't want to do due to the cost. I've bilateral tremors (mostly left side), including an inner tremor which isn't constant but regular. I've an under-performing left leg and a left arm that gets very weak on even minimal exertion. I only sleep for three hours at a time, my balance has been going in the last month and I'm really nauseous with the feeling it's giving me. Even when I sit down my head is swimming- this has been very difficult. Also my sense of smell has become less effective on certain scents. 

All that said, no one has noticed anything different about me, not my family or friends. As it's been ongoing for so long, they think I"m just looking for a problem. Which is not the case- I simply knew what it was very early on from experience and I'm frustrated at being told there's 'something' but still no diagnosis. It's been a lonely road, but I'm nearing the end of it. 

It's funny what you can actually tolerate. I panic'd with my first tremors two years ago, yet now they're so common place for me. Every few months new symptoms have become apparent and they freak me out for a while, then I just have to get on with it. 

I don't know how I'll cope as the symptoms progress, there are many uplifting stories here as well as sad ones and I live in hope that the Michael J. Fox foundation will hit on some sort of treatment before it's too late. 

Why am I writing this post? Primarily because there are very few other people I can talk to who understand. The diagnostic process is such a merry-go-round.  

I hope this message finds you well. 

Thanks for reading. 


Hi HughesNewbie

It's been a merry-go-round for a lot of us on here - including me! I knew I had PD nearly two years ago but have been fobbed off with anxiety and stress diagnoses. Then it was atypical PD, and finally today I saw a neurologist who told me my symptoms were actually very typical.frown

Good luck with the datscan, I hope it helps with your diagnosis and you can start on some medication (another minefield, apparently!).