New, undiagnosed but concerned. A few questions

Hi everyone :)

I apologize for coming here for answers, but I'm not sure where else to turn.

So I'll keep my story short. about 3 years ago I started having symptoms that concerned me, but were so vague that it could have been anything. They were things like all-over muscle twitching, generalized weakness, 'brain fog', and a lot of weakness and aching in my left arm and shoulder. Gradually as the years have gone on, my muscles have become progressively weaker, I've started hunching over more, moving more slowly, and things like that. My legs when I walk almost feel 'rubbery' and weak, and like there's a kind of disconnect between my brain and my legs, so walking has become difficult when I do it for too long.

I've noticed that I feel a 'vibration' in parts of my body, mostly my left arm and occasionally my legs, but there's no visible shaking. I just assumed it was because of my muscles twitching all the time and hadn't thought much else about it.

I don't have any tremors thankfully, but I do have a little difficulty with fine movements at times. My handwriting has become a lot worse, but I just assumed it was because I do more typing than writing lately.

Sorry this is so long, but this has been a long, difficult 3 years, and I'm desperately searching for any leads that would give me any kind of answer. The reason I'm here is because I was recently diagnosed with REM Behavior Disorder and was told by my sleep doctor that a lot of people go on to develop certain diseases like Parkinson's but that as of now I have no reason to worry because I'm still young (I'm 30).

I wanted to know if any of you here had similar symptoms before you were diagnosed with PD, or before the motor symptoms had developed. Particularly the brain fog/cognitive impairment part (that's the scariest part for me, as I'm deathly afraid of Alzheimer's and dementia).

Thanks :)

Null
You did not mention the earliesr symptom, loss of sense of smell. It can be decades before PD onset. I lost mine 30 years before onset.

Dan

I never had any fogginess or fatigue until recently when I added sinemet to my meds. One 25/100 in AM and I am foggy. Second one iin afternoon puts me to sleep. I am back to Azilect and Artane just like the last three years and feel fine.

Dan

Hello, I am new to this forum. I have been told by my primary care doctor that I have Parkinson's. He started me on sinemet. I have been doing better in some areas, but not in others. He would like me to get a neurologist to adjust my medications. I went to neurologists prior to starting on Sinemet. I was told by one that it is nerves or stress. Another said it was essential tremors. None of the medications for essential tremors helped.

I have lost my sense of smell. I can only taste salty, spicy, sweet and sour. I have numerous other symptoms of PD that are too numerous to list right now because of fatigue.

Does anyone know of a good movement disorder specialist? I live in the US in the southeast.

Null Memory,

I agree that you should see a neurologist ... and preferably a movement disorder specialist (MDS). You might want to research dystonia regarding your muscle stiffness. I can understand your concern, but I would get into a neuro as soon as practical and try to stop worrying. It is what it is ... you'll deal with 'it' when you figure out what 'it' is. Don't worry yourself sick by speculating.

 

lizzy4451