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I seem to be suffering with symptoms I had when I was diagnosed with DIP like stiffness and balance and OH

A MyParkinsonsTeam Member asked a question 💭
Newington, CT

Started that I never had and just tired and weak. I’ll be going for a Dat scan to see what’s going on. I thought I would just need a PET scan. Dat scan more effective? I had been diagnosed three years ago. I stopped using the drug and was starting to progress well for quite a while. So this is very discouraging. I also started having numb toes which is probably neuropathy even though I have no pain. Just feels like I have five socks on. I know I should be exercising but I’m just always so tired… read more

May 8
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A MyParkinsonsTeam Member

Thanks for the info Michael. You are very educated with this stuff. I’ve been doing some research. Sounds like I have the full blown PD. The OH is the most debilitating. I was reading that the vagus nerve may be involved. And if that gets compressed it can block the flow of blood to my head. ? Don’t know anymore. I see a cardiologist for the OH. I’m on Northera but isn’t helping much. I will be seeing a chiropractor and acupuncturist for my neuropathy and possibly vagus nerve. I’m running out of of doctors. I do have a neurologist who is ordering the DATscan to see if I have the real PD vs DIP. She’s a movement specialist so I’m in good hands.

May 12
MyParkinsonsTeam

It's completely understandable to feel discouraged — you made real progress and now things feel like they're sliding backward. That's genuinely tough, and your frustration makes total sense.

Regarding the DaTscan vs. PET scan question — both can image dopamine activity in the brain, but they work slightly differently. A Show Full Answer

It's completely understandable to feel discouraged — you made real progress and now things feel like they're sliding backward. That's genuinely tough, and your frustration makes total sense.

Regarding the DaTscan vs. PET scan question — both can image dopamine activity in the brain, but they work slightly differently. A DaTscan is particularly good at showing whether dopamine-producing cells are actually dying, which helps distinguish between a drug-related cause and true Parkinson's disease.

This distinction matters a lot in your situation. There is research suggesting that certain medications can sometimes "unmask" underlying Parkinson's that was already present. Your doctor ordering a DaTscan is a smart and targeted step to get clearer answers. The returning symptoms — stiffness, balance issues, fatigue, and weakness — are worth discussing thoroughly with your neurologist, especially alongside the new numbness in your toes. Keeping a symptom diary before your appointment can really help your doctor see the full picture.

On the exercise front, it's a real catch-22 when fatigue and lightheadedness get in the way. A few gentle options that may be easier to manage include:

- Seated stretching or chair yoga — low effort, still helpful
- Short, slow walks — even 5 minutes counts
- Balance exercises while holding something stable

Always check with your care team before starting anything new, especially with the lightheadedness you're experiencing. They may also be able to help manage that symptom so exercise feels more possible.

Hang in there — getting the DaTscan is a positive and proactive step forward.

May 8
A MyParkinsonsTeam Member

Hugs back everyone 🤗

May 12

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