Not diagnosed, but convinced I have Parkinsons! What did you experience pre-diagnosis?

Hi everyone, such a great forum. Thank you for taking the time to read and hopefully share your experiences surrounding parkinson’s. I haven’t yet be diagnosed with anything, but have well and truly convinced myself I have Parkinson’s.

I am a 27 y/o male who has always lived a healthy lifestyle in regards to exercise, diet and all other factors. I’ve never had any health problems until 2 years ago where I suddenly experienced a couple of weeks of bad constipation. This randomly triggered a massive anxiety about my health including all the classical anxiety symptoms.

Last year, 2018, I went into Atrial Fibrilation requiring a cardio-version. Around this time I began to notice a tremor which has since progressed. Both hands tremor, my legs tremor and sometimes my whole body can feel as though it is shaking. I have stiffness in my right side. Hand, fingers, forearm, shoulder, abdomen and legs. I can actually see and feel the tight muscles on my right as they are a lot more prominent. I also get frequent cramping, especially in the arches of my feet, which can be quite painful. I feel slower on my right side, but as of present only I can notice this. Every night I wake up with a numb right hand, like pins and needles. And my sleeping is very broken.

I’ve seen 2 different neurologists and a parkinson’s specialist all privately who don’t think I have anything sinister. I know I am super vigilant and am extremely aware of anything slightly off with my body. I read through the forums and every symptom I see I can relate to what I’m experiencing. I can still run 8 miles, surf and exercise regularly, however vigorous exercise makes my tremors worse.

Does this sound like anything you have experienced. I know I should just try and move on and enjoy my life since i’ve been checked over a few times but I am just finding it so difficult.

Thanks so much for your time, it means a lot.

I am by no means an expert, but I will say I have never had pins and needles in my hand. I was diagnosed two and a half years ago after having had symptoms for a couple of years. Also, I think Parkinson’s usually comes on unilaterally, so it seems unusual that BOTH your hands and legs have tremor. I would go back to a neurologist and ask for head and neck MRIs, and a DATScan. Tell them that the worry is preventing you from living your life.

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Hello Sam
This is a difficult one because having been seen by three specialists who don’t believe you have Parkinson’s, your brain is obviously convincing you otherwise. What do they think all your presenting symptoms are pointing towards if not Parkinson’s? There must be a reason. You are clearly aware of changes in your body because of the lifestyle you lead but, and this is not a direct comparison merely an observation when attending medical lectures at college on conditions we would usually come out afterwards convinced we had x y and z. Could it be that you are doing a similar thing and making more of the symptoms than is actually the case. That is all conjecture of course. Fact is Parkinson’s does not have a definitive test and many have to wait a considerable period before getting a formal diagnosis. It might be you are not yet displaying the classic symptoms by which a formal diagnosis can be made. Have you read this on the Parkinson’s UK site
In your shoes I would be asking exactly the same questions for the same reasons as GoJo. If it’s not Parkinson’s but your varied symptoms are causing such anxiety there must be some explanation. I have to say though I doubt you will get an explanation quickly. I wish you luck

Sam, I am no expert but I would ask for another opinion from a different Neurologist. Depending on where you are located in the country I would ask to see someone at Addenbrookes Hospital, Cambriidge or Southmead Hospital, Bristol. I would say that you DO have Parkinsons though you may get told your tremor is Essential but I would say Dystonic but as @GoJo said I would push to get MRI and Datscans done, these will conclusively confirm whether or not you have the disease.


Any updates on this, Sam?