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Have You Ever Questioned Your Diagnosis Of Parkinson's? It Could Be Something Else. Parkinson

Have You Ever Questioned Your Diagnosis Of Parkinson's? It Could Be Something Else. Parkinson

A MyParkinsonsTeam Member said:

@A MyParkinsonsTeam Member et al,
I had an interesting confirmation of my Parkinson's disease yesterday.
My neurologist was concerned about the fact that my throat constricted on me several weeks ago while I was talking to some guests at our vacation rental. My words were literally getting throttled and my throat was constricting so completely around those words that my voice was disappearing.
I told my neurologist, of course, at my next appointment and he asked me to go and see an ENT doctor, just to make sure there was nothing physically wrong other than the Parkinson's disease.
So I went yesterday for that appointment and the ENT doctor put a camera up my nose and down my throat to watch my voice box while he had me talk.
After he took the camera back out of my poor little nose, he told me that he thought there was a little bit of acid reflux damage but that 90% of it was definitely due to the Parkinson's disease.
He said he could actually see the essential tremor in my vocal cords as I spoke. He said that when I started talking my vocal cords were working reasonably well but that the longer I talked the more they constricted and the tremors increased.
Just one more confirmation that this is indeed Parkinson's.
I find the conversation about Epstein-Barr and herpes virus (which I contracted 3 decades ago & have under control but have not eliminated), and these various other viruses very interesting. I was diagnosed with CFIDS back in the late 90s and when they undertake the daunting task of diagnosing you they have to run you through a battery of tests in order to eliminate other things, including Epstein-Barr.
It makes me wonder if the CFIDS is in some way a precursor to the Parkinson's disease, because it is so similar to the likes of EBV. It has often crossed my mind lately that several of my symptoms echo from those years dealing with CFIDS. And if CFIDS is so much like EBV that the two can be confused, it seems to me that, now that there is research possibly implicating EBV in the generation of PD, that syndromes like CFIDS (& even fibromyalgia) should possibly also be investigated.

posted over 4 years ago
A MyParkinsonsTeam Member said:

@A MyParkinsonsTeam Member - @A MyParkinsonsTeam Member - knowledge is power. It pushes back the darkness and fear, sometimes a little, sometimes a lot. With the amount of inconsistent and sometimes contradictory flood of data concerning PD, it can be daunting.

On the other hand, the effort required to make sense of it all is what keeps one active, involved in DOING something. And who knows, you could find something useful to you and many others. Worth the effort, wouldn't you say? I would and I think the gang here would, too.

posted over 4 years ago
A MyParkinsonsTeam Member said:

@A MyParkinsonsTeam Member. Hello Sterling 2, no I haven't queried my diagnosis simply because it came as a shock to be told it was a disease and not a trapped nerve that was causing my tremor. My GP had referred me to the movement disorder Consultant at the hospital.i and immediately after the diagnosis I was ushered into another room to see a physiotherapist who Asked"Have you started falling over yet?". Needless to say when I got home I read as much as I could about PD as I was completely ignorant about it, I realised that I have had some symptoms for quite some time but was told it's 'designer disease' so not to expect all the symptoms. I hope you are keeping well yourself I forget that you are ill yourself as you are such a lovely caring Mother Hen to all your team. Thank-you special hugs to you!

posted over 4 years ago
A MyParkinsonsTeam Member said:

Expanding the esophagus made it easier to swallow. Plus they check for polyps, growths etc.

posted almost 4 years ago
A MyParkinsonsTeam Member said:

i some times get visible tremors but most of the time they are internal and it takes someone to give me a big hug to feel them. I know they are there as my insides feel as if i'm on a vibrating machine. My main problem is dyskinesia. It depends on what that I may be doing ( meeting new people, stress from any where, doing
something I used to do and now I can't do. ) There are so many things that can make me shake rattle and roll but there are times I can turn things off and be a semi normal person for short periods of time. Hope the above makes sense and if it doesn't it's because I have Parkinsons LOL

posted about 4 years ago
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