2 brain hemmorhages and an MS misdiagnosis

Posted by roo124 @roo124, Nov 19 1:06pm

I was diagnosed as having MS in 2013 and as I was in a relapse I was given 5 days or oral presolone. On the 5th day I had a large subarachnoid brain hemmorhage. I had to stop work etc. I was in inpatient and outpatient care for 2 months. I was also given beta interferon, copaxone, techfidera etc for the MS. Fast forward to 2022 and I was having confusion, fever etc and was given IV steroids and yet again had another brain hemmorhage. I have been told by 10 different people that the steroids could not have caused the brain bleeds. I have now been told by another neurologist (second opinion) that I 100% do not have MS and also they are unsure why I have had two brain hemmorhages. He has also classified the first hemmorhage as Intercerebral and not subarachnoid. I have had half gene genetic testing for CAA and small vessel disease, 4 CTA’s and nearly 100 MRI’s in the last 10 years. I feel like I have been hit by a truck and have the flu every day of my life. My blood tests are never consistent and they have ruled out every autoimmune diseases. The Neurologist is convinced I have something going on running along but possibly tying into the brain bleeds but no one knows what. I am dizzy, incredibly fatigued, have no bladder function and no quality of life etc etc. Has anyone been through anything like this or has any help they can offer? Thanks so much, take care everyone

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In reply to @stevegrinstead "Please check for SS" + (show)

Please check for SS

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Thanks Steve. So you mean Superficial Siderosis? I’m just googling it now!


Yes. Also go to Mayo Clinic/Steve GRINSTEAD. I had a leak in my dura. Mayo fixed it but that didn’t remove the iron deposits left on my cerebellum so I still have SS.


Ok thank you, I will start researching it now. I will find your thread and see how you were diagnosed. Thanks again


@stevegrinstead I just got this reply from my Neurologist…
‘cortical superficial siderosis (SS) and convexity subarachnoid hemorrhage are almost identical terms. You have cortical SS, not the classical idiopathic SS syndrome that involves typically the cerebellum and brainstem and causes also hearing loss’
Thank you for the idea though, does anyone have anymore? Thanks guys


Have you tried seeking assistance from a large teaching hospital that perform neurologic research? On the surface I would agree with you that steroids may play a part in your acute brain bleeds. I suggest you should consider wearing an allergy bracelet and not allow anyone to give you a steroid in any formulation unless it’s for diagnostic/research purposes to find the cause. Good luck

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