Superficial Siderosis

Posted by alwaysgail @alwaysgail, Dec 15, 2018

I am desperate to find anyone familiar with this disease

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stevegrinstead | @stevegrinstead | Jan 19 1:58pm

In reply to @janeilene "@stephenstroud Too much. Going to doctors has become my social life. (sigh)" + (show)

Please make sure that you have doctor or doctors that know much about SS, otherwise you will be wasting your time. Time is very important with SS

janeilene | @janeilene | Jan 19 6:33pm

In reply to @stevegrinstead "Please make sure that you have doctor or doctors that know much about SS, otherwise you..." + (show)

@stevegrinstead
I have an appointment with my neurologist next Monday. I'll ask her to tell me about l SS to see what she knows about it. Maybe I can fill her in. She tells me to keep off the internet
when I want to find out about these diseases and since I'm not having a lot of issues such as not a lot of brain bleeds right now so everything's being stable. I'm obviously more interested in siderosis than she is. I guess she will have to refer me to Mayo..I probably can't just call and ask for an appointment can I ?

stevegrinstead | @stevegrinstead | Jan 19 8:48pm

It is not your job to educate your Dr. It is your Dr. job to educate you. She doesn’t want you to access the internet because she is afraid that you already know more about SS than she does. She is right, you do know more about SS than she does. Try to get a recommendation to Mayo and never look back at her.

stevegrinstead | @stevegrinstead | Jan 19 8:49pm

In reply to @janeilene "@stevegrinstead I have an appointment with my neurologist next Monday. I'll ask her to tell me..." + (show)

How do you know that you don’t have an active bleed? @janeilene

janeilene | @janeilene | Jan 20 12:07am

I just had an MRI on December 15th. The report says: SWI demonstrate some superficial siderosis with some hemosiderin staining in the sulcal spaces in the left parital lobe indicating prior microhemorrhage. These findings are unchanged from the prior (which was last July). No new microhemorrhage. No new areas of hemosiderin staining appreciated.
Sounds to me that everything is stable. I don't know how long microhemmorrhages bleed, but sounds like they aren't anymore.

janeilene | @janeilene | Jan 20 12:46am

In reply to @stevegrinstead "It is not your job to educate your Dr. It is your Dr. job to educate..." + (show)

@stevegr
O.K. Thanks. I'm under the impression from my PCP that Neurologists are hard to find in our part of the state. I just get the feeling that both the PCP and neurologist just wants to pat my head and say "there, there grandma" because at my age I probably have enough other problems so why mess around with SS.
Anyway I will try to get a referral from her and hopefully she will hear me out and refer me.
Thanks Steve. I'm sure I'll have more questions.

stevegrinstead | @stevegrinstead | Jan 20 8:42am

In reply to @janeilene "@stevegr O.K. Thanks. I'm under the impression from my PCP that Neurologists are hard to find..." + (show)

@janeilene you have a good attitude. Now you need to maintain your good attitude when you face discouraging circumstances, and you will face discouraging circumstances. May Jehovah be with you.