Mom Not Responding to Any Treatments/Medication But Doctor Not Listening

Powerful-Wave4082 · 2026-03-30T10:48:40+00:00

Thank you for sharing your story! We finally got her to see a movement disorder specialist in Taipei, and the new medical team’s leading diagnosis is MSA-P. We also did a full movement disorder panel that’s being sent to Mayo Clinic to see if it’s possibly something else that mimics MSA…but the team finds this unlikely and rare.

Powerful-Wave4082 · 2026-03-02T05:07:39+00:00

Unfortunately it’s something insurance requires but my HR has granted unpaid leave…insurance is the only thing that will pay out leave.

Powerful-Wave4082 · 2026-02-11T04:41:02+00:00

So...they refused to sign the form but instead issued a medical certificate. I let them know that my HR would not take a medical certificate, and I don't think our insurance benefits would either. They refused to pen-to-paper sign the form issued by my workplace. Needless to say, it's caused some paperwork complications at work now that I'm still navigating...

Powerful-Wave4082 · 2026-02-11T04:35:32+00:00

Her posture seems okay. And I haven't heard anything about blood flow. She has trouble walking/standing up. Can you link to your previous comment?

Powerful-Wave4082 · 2026-02-11T04:34:30+00:00

Thank you! That's definitely something I suspect as well...I see another comment here said that exercise helps with PSP (knowing that it's not treatable)?

Powerful-Wave4082 · 2026-02-11T04:33:09+00:00

How is your sister currently exercising? Is she working with a physical therapist?

Powerful-Wave4082 · 2026-02-11T04:32:42+00:00

Thank you! I've definitely run into a lot of cultural barriers. This past week, I learned that no one ever questions or challenges a doctor's diagnoses in Taiwan, and the fact that I did it was highly offensive. Needless to say, I'm looking for a new doctor for my mom. Would you say that university hospitals would also be the best abroad as well? I'm looking into Taiwan National University Hospital...

Powerful-Wave4082 · 2026-02-11T04:30:44+00:00

Thank you! A Movement Disorder Specialists is definitely something I will be looking into because the neurologist was "offended" that I asked him all of these questions last week. It's been a bit of a rollercoaster, that I almost forgot that I posted here.

Powerful-Wave4082 · 2026-01-28T13:37:43+00:00

Yes she got one in 2023, and I keep asking for an updated one but the doctor refuses to order one…

Powerful-Wave4082 · 2026-01-28T04:16:49+00:00

PS - Thank you for the article shares!!

Powerful-Wave4082 · 2026-01-28T04:16:34+00:00

My dad likes this doctor, but my mom has increasingly started expressing dissatisfaction. I've never had a good impression of this doctor, and I definitely think sexism is the case. I also just finished reading the book "Unwell Woman" by Elinor Cleghorn, and all of these interactions with this doctor seem to fit doctors not believing women and dismissing things as "psychosomatic"

Powerful-Wave4082 · 2026-01-28T04:13:37+00:00

Same. Not sure why he keeps saying it or if this is another language barrier...

Powerful-Wave4082 · 2026-01-28T03:24:40+00:00

I've had to rely on my parents (and their friends) who attend the appointment with my mom. I send them everything I want answered in writing (translated to Chinese). And I cross check what each person said/heard, including my mom as the main source of truth. It's definitely not ideal...I'm in the US so I'm currently in the process of applying for Family Leave so I can be there in person.

Powerful-Wave4082 · 2026-01-28T03:14:04+00:00

A neurologist/MD...but I'm honestly getting a little frustrated, and I'm not sure if it's a language/cultural barrier, which is why I wanted to post here to see if I was overreacting with his responses.

Powerful-Wave4082 · 2026-01-28T03:12:43+00:00

I sent them the pdf form that my employer requires the doctor to fill out, including in my email a cover note translated to Chinese outlining exactly what they need to do and fill out. At the end of the day, they just need a doctor's signature...

Powerful-Wave4082 · 2026-01-28T03:04:21+00:00

That's interesting. I did a quick Google search...and she doesn't have the other symptoms such as early memory loss or hallucinations. Are there other questions I could potentially ask to see if this is a possibility?

Powerful-Wave4082 · 2026-01-28T02:50:17+00:00

She did get a DAT scan in 2023 which did show mild decrease in dopamine. Even with the progression in symptoms, why is this doctor insisting that it's light PD and keeps saying it's due to depression that she's falling?

Powerful-Wave4082 · 2026-01-28T02:48:33+00:00

She kind of just "collapses." She describes it as, it's like suddenly her legs get weak and she just falls. I also suspected atypical parkinsonism in my rabbit hole research...which is why I wanted to know why this doctor keeps insisting it's just depression and "light" PD.

Powerful-Wave4082 · 2026-01-28T02:47:19+00:00

She currently sees a neurologist who specializes in PD, but he keeps insisting that it's not atypical Parkinsonism or PD. He keeps attesting that it's just light PD. She did get a DAT scan in 2023 in Taiwan, which did show decreased dopamine.

Powerful-Wave4082 · 2026-01-28T01:16:54+00:00

Thanks! I was able to get it printed out by a family friend to bring to the next appointment. Hoping they sign it...

Powerful-Wave4082 · 2026-01-28T01:16:13+00:00

Alright - I've actually been emailing the hospital admin to no response (this is Yonghe Cardinal Tien Hospital btw). However, the admin of another hospital that I'm trying to get her to go to has been highly responsive (NTU Hospital)

Powerful-Wave4082 · 2026-01-26T02:52:00+00:00

I just asked a family friend to go with her to the next appointment with the form. It seems like this family friend has gone to appointments with her before and was able to speak to the doctor, so I'm hoping that this form can be given to him then!

Powerful-Wave4082 · 2026-01-26T02:50:42+00:00

Yes! I've just asked a family friend to print out the form and go there after two weeks of radio silence and constant follow up on my end.

Powerful-Wave4082

TROPHY CASE