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alwaysgail
@alwaysgail

Posts: 3
Joined: Dec 11, 2018

Superficial Siderosis

Posted by @alwaysgail, Dec 15, 2018

I am desperate to find anyone familiar with this disease

REPLY

Hi, @alwaysgail – welcome to Mayo Clinic Connect. Understandable you'd like to find others familiar with your disease.

This information is from Mayo Clinic's medical professionals hub and is written for medical professionals, but I wanted to share this article with you on superficial siderosis https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/success-with-treating-some-superficial-siderosis-cases/mac-20431187

I'd like to introduce you to some members who participate in the Brain & Nervous System group on Mayo Clinic Connect @jakedduck1 @kariulrich @dawn_giacabazi @hopeful33250 @johnhans.

Wondering what types of symptoms you've been experiencing from this condition, @alwaysgail?

@lisalucier

Hi, @alwaysgail – welcome to Mayo Clinic Connect. Understandable you'd like to find others familiar with your disease.

This information is from Mayo Clinic's medical professionals hub and is written for medical professionals, but I wanted to share this article with you on superficial siderosis https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/success-with-treating-some-superficial-siderosis-cases/mac-20431187

I'd like to introduce you to some members who participate in the Brain & Nervous System group on Mayo Clinic Connect @jakedduck1 @kariulrich @dawn_giacabazi @hopeful33250 @johnhans.

Wondering what types of symptoms you've been experiencing from this condition, @alwaysgail?

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So far I have experienced signficant hearing, snd smelling loss along with major balance issues.

@alwaysgail

So far I have experienced signficant hearing, snd smelling loss along with major balance issues.

Jump to this post

Hi, @alwaysgail – will you share a bit more about how you came to visit the doctor and receive this diagnosis? What was prescribed so far for treating your superficial siderosis?

About 6 years ago I fell and had a brain MRI to rule out a brain bleed. Everything looked fine and I was released. A year ago I started experiencing severe balance problems and a neurologist indicated it was probably due to the Superficial Siderosis which showed up on a new MRI. The old MRI showed it was there in 2011. There is no active bleed so surgical intervention is not indicated. PT and assisted divise.

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