Today's recheck

[kaypeeoh]

I thought I'd be getting the DAT scan today. But I was wrong. Today's exam was for the doctor too see whether the Botox treatment had worked. Her associate did an exam. I knew the tilt test was coming and braced myself. So she pulled on my shoulders and I held my ground, not needing to step back. Then she pulled harder and I took two steps back.

Then the elbow check. I don't like being touched. She started with the left arm. There was some tension in my elbow. She remarked on the tightness. Then on to the right arm I forced myself not to react to her touch. Then she commented on the difference in tension between the two. Later she summarized on tightness in the left elbow. Also the fact that during the tilt test I took two steps back while a normal person would have only needed one step to keep balanced.

For a while both doctors were out of the room and I could hear several voices raised. She came back in to say they're all talking about me.

No point in saying I'd been reacting to being touched. Or that I only took two steps because she was quite close and I worried one big step might cause me stomp on her foot.

I knew we were done when she picked up my coat and held it for me to put on then zipped it closed for me like I was a 5-yr old. Bottom line is no changes til the DAT scan which is scheduled for late March.

And she gave me a plastic brain to squeeze during stress, like giving a 5-yr old a lollypop.

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[Allypally49]

The DAT scan, so I've read gives the result that its a 80% chance you get have PD.

Other than that It serves no purpose.

The only way to confirm PD is when one is no longer with us and they do a PM

in that brain area

[Dap1948]

My neurologist wanted to give me a DatScan eleven years after diagnosis. She found it hard to believe that thiamine could cause so much improvement. I turned the test down. I know I have PD, even though it is a lot better, and I didn’t fancy the procedure!

[BootsOn]

kaypeeoh Squeeze the plastic brain and pretend it's her neck 😉

[Kt088]

I had a Dat scan years ago and it confirmed the PD but you are taking a risk because the medication they give you prior is very bad for the thyroid and the test was very uncomfortable with your head strapped down and all for 45 minutes! Not for the claustrophobic person that’s for sure! If you’ve been dx’ed with Parkinson’s and you know you have it based on your symptoms, it really isn’t necessary in my opinion. You are not missing anything good or easy to go through for sure. Just focus on doing all you can to give yourself the best quality of life. Exercise and diet has been a life saver for me. I’ve had Parkinson’s for 15, going on 20 years now and I still just take 3 sinemet pills a day and nothing else. Best of luck.

[glenandgerry in reply to Kt088]

Do you take any supplements?Well done you, only taking 3 Sinemet a day after all those years.

My hubby was diagnosed nearly 16 years ago. He stopped taking sinemet last year as it made him feel worse. He's presently taking 2 Madopar per day (am & pm) and 2 Amantadine per day.

He has arthritis and has had 2 knee joint replacements.

His main problems are sciatic pain and bradykinesia. Because of the pain, he is unfortunately unable to exercise. Are you still able to exercise?

Hubby takes a lot of various different supplements - not sure if any of them help though.

[glenandgerry in reply to glenandgerry]

Sorry, just seen that you (kt088) are still able to exercise. That's good. I expect that's one of the reasons you are doing so well after all these years.

[Kt088 in reply to glenandgerry]

Yes I exercise every morning and all the walking around the house every day as I care for my 3 grandkids amounts to at least 3 miles. I use a pedaling machine similar to the Cubi as seen on tv four an hour or so each day and I do take a variety of supplements and such and I’ve not ever taken any agonist or other medications. I tried requip for a very short time early on but it gave me horrible headaches. In regards to your husband, movement is key. If he can’t walk long or fast enough to make a difference then getting a sit down pedaling machine as I have would be very beneficial I believe. There are also many you tube exercise videos for PWPs. Diet is also key as well. I also have found that using cbd oil every day as I have for many years has helped me a great deal. I wish you both the best.

[kaypeeoh in reply to Kt088]

The only diagnosis is response to Sinemet. I used Sinemet off-and-on for over three years with no change in the tremor.

[fondrees]

I know its hard, but i think u need to be a little more assertive. These little tests can dramatically change the course of your treatment, for the worse if innaccurate