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Has anyone ever been diagnosed with Paraneoplastic syndrome

Posted by suzanne63040 @suzanne63040, Dec 6, 2025

I am being tested for paraneoplastic antibodies and also ganglion’s antibodies.
I have a dysautonomia disorder along with adrenal insufficiency and Polymyalgia Rheumatica. So many overlapping symptoms. Strongest are orthostatic hypotension and extreme fatigue. Also GI issues.
Now testing for paraneoplastic and ganglion’s lab tests. I’m a little worried 😟

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blainen1 | @blainen1 | Dec 12, 2025

I was tested for it 3 weeks ago. The tests came back negative but the neurologist that ordered the tests told me even if they came back negative I still probably had it as a result of a pancreatic neuroendocrine tumor that was remove a bit less than a year ago. There are many different kinds of PNS and your symptoms sound like some I have read about. I am sorry you are going through this.

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lasks | @lasks | Dec 13, 2025

I was diagnosed with Paraneoplastic cerebellar ataxia in 2022. Initially treated with high dose steroid infusions for 9 months then CellCept. Last 2 years I have been receiving IVIg and steroid infusions. I am back to 80% normal.

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suzanne63040 | @suzanne63040 | Dec 13, 2025
In reply to @blainen1 "I was tested for it 3 weeks ago. The tests came back negative but the neurologist..." + (show)
Profile picture for blainen1 @blainen1

I was tested for it 3 weeks ago. The tests came back negative but the neurologist that ordered the tests told me even if they came back negative I still probably had it as a result of a pancreatic neuroendocrine tumor that was remove a bit less than a year ago. There are many different kinds of PNS and your symptoms sound like some I have read about. I am sorry you are going through this.

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@blainen1
Thank you so much for your reply. I am thankful that your tumor was found and removed and I pray that you are finding some relief from any ongoing symptoms that I can only imagine you may currently be experiencing.
Suzanne

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suzanne63040 | @suzanne63040 | Dec 13, 2025
In reply to @lasks "I was diagnosed with Paraneoplastic cerebellar ataxia in 2022. Initially treated with high dose steroid infusions..." + (show)
Profile picture for lasks @lasks

I was diagnosed with Paraneoplastic cerebellar ataxia in 2022. Initially treated with high dose steroid infusions for 9 months then CellCept. Last 2 years I have been receiving IVIg and steroid infusions. I am back to 80% normal.

Jump to this post

@lasks
Thank you so much for sharing your story. Such a blessing that you are 80% back to normal. I know how tough all steroids can be so I’m sure you had quite a rough journey with the meds that you require to get healthier. I pray you continue to progress in your healing.
Suzanne

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lasks | @lasks | Dec 13, 2025
In reply to @suzanne63040 "@lasks Thank you so much for sharing your story. Such a blessing that you are 80%..." + (show)
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@lasks
Thank you so much for sharing your story. Such a blessing that you are 80% back to normal. I know how tough all steroids can be so I’m sure you had quite a rough journey with the meds that you require to get healthier. I pray you continue to progress in your healing.
Suzanne

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❤️

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