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Trouble diagnosing Parkinson's

Parkinson's Disease | Last Active: Aug 29, 2023 | Replies (11)

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@hopeful33250

Hello @kerryberry and welcome to the Parkinson's support group on Mayo Clinic Connect. You and your family are certainly dealing with a lot of neurological problems.

As I was unfamiliar with the diagnosis of PANDAS, I did some internet research and found this information for others, like me, who are unfamiliar with it. Here is a link to the information,
https://my.clevelandclinic.org/health/diseases/23553-pandas-syndrome

If you are comfortable sharing more, how long ago was your child diagnosed with PANDAS? What type of specialist diagnosed this? Were there scans, or blood tests that revealed this or was it diagnosed by ruling out other possible disorders?

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Replies to "Hello @kerryberry and welcome to the Parkinson's support group on Mayo Clinic Connect. You and your..."

Thank you! Yes, we have a fair amount of near issues in just three generations. My child also developed a mild case of POTS (just barely meets the criteria) and while the PANDAS is in remission, thankfully, they still have significant fatigue due to the pots. In my child's case, there was clearly an association between strep infections and deteriorations. There were a lot of other conditions that were ruled out, including Wilson's (which is a copper metabolism issue so very different treatment). Ultimately, it is still considered a diagnosis of exclusion, as a biomarker hasn't been confirmed yet (although there is ongoing research and my child had various abnormal labs, including complement activation even after the infection was treated and cleared). There have been a couple of studies using MRI and one that used a particular analysis to detect volume changes in the basal ganglia. It took some time for a proper workup and diagnosis, and that was 6 years ago. Their fatigue now looks sort of like mine, but they do not have a fibromyalgia diagnosis. I try to learn everything I can in the hope that they can reach full health and their potential.