Hello, @staffordpark - welcome to Mayo Clinic Connect. I'm sure that @alwaysgail will be happy to meet you and share experiences. What types of symptoms have you experienced from your superficial siderosis, staffordpark?
Thanks @lisalucier , my main symptom and the one i was having tests for when my ss was found is balance problems. My hearing and sense of smell at this stage are both unaffected. I am taking the iron chelator mentioned above to try and stop
progression of symptoms and hopefully preserve my hearing. I’ve been taking it about 15 months so far. I have not deteriorated in that time. There is a group of people with ss from around the world that communicate via a Facebook group if you are on social media
It is diagnosed by mri. It is the only disease which shows up with a certain pattern on a particular mri sequence. The disease itself shares many symptoms with other neurological diseases like ms, Parkinson’s etc. There are a few people on the Facebook group- myself included who initially were thought to have ms, until the mri showed the ss.
It is diagnosed by mri. It is the only disease which shows up with a certain pattern on a particular mri sequence. The disease itself shares many symptoms with other neurological diseases like ms, Parkinson’s etc. There are a few people on the Facebook group- myself included who initially were thought to have ms, until the mri showed the ss.
Early on I had symptoms that matched ms. I have optic neuritis from iron deposits on my optic nerve, I had numbness, slight tremor, fatigue, dizziness/balance problems. I went to an ent specialist as I initially thought it was a vestibular problem. He sent me for balance tests which showed my problem was from a central disorder. When I asked him what that meant he said something like ms, Parkinson’s etc. when I saw him again after my ss diagnosis, he told me he thought I had early stages of ms
Early on I had symptoms that matched ms. I have optic neuritis from iron deposits on my optic nerve, I had numbness, slight tremor, fatigue, dizziness/balance problems. I went to an ent specialist as I initially thought it was a vestibular problem. He sent me for balance tests which showed my problem was from a central disorder. When I asked him what that meant he said something like ms, Parkinson’s etc. when I saw him again after my ss diagnosis, he told me he thought I had early stages of ms
Hi @lisalucier , it’s early days really so hard to tell. On mri there has been no improvement, but no worse so that is good. I have had a visual evoked potentials test before starting chelation and after 6 months and that has improved dramatically. I have just been approved for funding for a second year of chelation, so the hospital must believe it’s worth pursuing. I’m hopeful there will be a visual improvement on mri after the second year
Hi @lisalucier , it’s early days really so hard to tell. On mri there has been no improvement, but no worse so that is good. I have had a visual evoked potentials test before starting chelation and after 6 months and that has improved dramatically. I have just been approved for funding for a second year of chelation, so the hospital must believe it’s worth pursuing. I’m hopeful there will be a visual improvement on mri after the second year
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Hello, I have recently joined this site as I saw your post @alwaysgail . I also have superficial siderosis. I was diagnosed about 3 years ago.
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1 ReactionHello, @staffordpark - welcome to Mayo Clinic Connect. I'm sure that @alwaysgail will be happy to meet you and share experiences. What types of symptoms have you experienced from your superficial siderosis, staffordpark?
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1 ReactionThanks @lisalucier , my main symptom and the one i was having tests for when my ss was found is balance problems. My hearing and sense of smell at this stage are both unaffected. I am taking the iron chelator mentioned above to try and stop
progression of symptoms and hopefully preserve my hearing. I’ve been taking it about 15 months so far. I have not deteriorated in that time. There is a group of people with ss from around the world that communicate via a Facebook group if you are on social media
How is this diagnosed?
It is diagnosed by mri. It is the only disease which shows up with a certain pattern on a particular mri sequence. The disease itself shares many symptoms with other neurological diseases like ms, Parkinson’s etc. There are a few people on the Facebook group- myself included who initially were thought to have ms, until the mri showed the ss.
@staffordpark - why do you think you were initially thought to have multiple sclerosis?
Early on I had symptoms that matched ms. I have optic neuritis from iron deposits on my optic nerve, I had numbness, slight tremor, fatigue, dizziness/balance problems. I went to an ent specialist as I initially thought it was a vestibular problem. He sent me for balance tests which showed my problem was from a central disorder. When I asked him what that meant he said something like ms, Parkinson’s etc. when I saw him again after my ss diagnosis, he told me he thought I had early stages of ms
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1 ReactionHi, @staffordpark - how has the iron chelation therapy gone for you?
Hi @lisalucier , it’s early days really so hard to tell. On mri there has been no improvement, but no worse so that is good. I have had a visual evoked potentials test before starting chelation and after 6 months and that has improved dramatically. I have just been approved for funding for a second year of chelation, so the hospital must believe it’s worth pursuing. I’m hopeful there will be a visual improvement on mri after the second year
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2 ReactionsHi, @staffordpark - wondering how you are doing and how your iron chelation therapy has been going? How are things with your balance?