Superficial Siderosis: the incurable *****
 

well .. that's what the neuro consult told me ... I was just diagnosed with this extremely rare disease caused by bleeding into the brain and CSF. I was born with a joint disease that destroyed my joints and left me with premature OA.

I had the first of 6 hip replacements at 31 and just had my 30th (?) surgery .. I lost count but it was 4 this year. My spine was in pretty bad shape also .. I had spondylolysthesis, stenosis, bulging and herniations, spurs, etc. I have had 5 spinal surgeries so far. 4 on my cervical spine to date .. There are 25 screws, some plates, biomorphoprogenic disks, and PEEK cage holding my neck together.
I have the same stuff, to a lesser degree, in my lumbar spine. It'll be just a matter of time before I need more surgery there. Anyway, I think that I may have built up scar tissue and it bled/bleeds/bleeds intermittantly into my CSF and the subdural area of my brain. When the red blood cells dissipate, siderin, or iron, is left behind. They bind with certain nerve cells like magnets and start the process of demyelinization and destruction.

I think they call it myelopathy. Gradually, over the last 10-15 years or so, I have been complaining of dead spots on the bottoms of my feet. I blamed it on nerve damage from the THRs.
My short term memory is getting terrible .. I blamed it on all the pains meds I'm on as a chronic pain sufferer and having Fibromyalgia. Numbness and tingling in my hands? cervical spine surgery. Hearing loss ?

Well .. my dad had some too ... heriditary. Then I lost all sense of taste and smell. My ENT said the cilia was damaged in my nose and there was nothing he could do. In other words, live with it. Tripping and walking like I'm drunk, chronic clumsy? Spinal problems. Bladder and bowel problems? Lumbar spine nerve damage. I mean .. no feeling AT ALL down 'there' caudal nerve damage will do that. Nasty headaches at the base of my skull all the time? Cervical spine nerve damage ...

I had an excuse for EVERYTHING. I was at my ortho about a rotator cuff tear (my third) and told him about the pain running down my arm. He said " that's not from the rotator cuff ... that's your cervical nerves." He referred me to a neurologist who sent me for MRIs of my lumbar, thoracic and brain. I had EMGs or evoked potentials or whatever they're called. I had all the usual reflex and gait tests, cognitive testing and then the famous consult who said, "this disease, Suoerficial Siderosis, is a *****."

Couldn't it be MS? No .. according to the MRIs, I have areas of black .. like black worms .. on the outside of my brain and in my spinal cord. These are the damaged nerves with the iron deposits. Unfortunately, it is so exceedingly rare, there are like maybe 11-12 people in the US with it right now. 80 or so worldwide. There is no cure. I will lose my hearing totally. A cochlear implant may or may not help .. there's nothing to prove it will.

I will eventually end up in a wheelchair. The neuropathy is creeping up my legs slowly. At night my feet burn and feel ice cold ... but they're not. The numbness is now creeping up my ankles. My hands tremble .. they get constant tremors which can be a little bit embarrassing ...
I argue with people because I swear they never told me something that they say they did ... and they're probably right. I can't remember a phone number from hearing it to writing it down ... I can't remember instructions, my vocab recall stinks .... everyday, simple words are a burden to remember. And now I'm having a problem with my eyesight !

Which is something new ... I don't recall seeing it on the list of symptoms. Anyway ... it's a HUGE kick in my ***. It's a HUGE kick in my husband's *** and it has thrown my 3 kids into a sort of limbo. I thought that at most i would have to deal with this horrible MED - Multiple Epiphyseal Dysplasia - which destroys the growth plates and cartilage and results in multiple joint surgeries .. and you end up in chronic pian ..Then Fibromyalgia ... gee.. no surprise there .. my poor body can't get out of its own way !

But THIS? the end result ? Dementia! I am not leaving one stone unturned trying to do research on this insidious piece of crap that snuck up on me, slowly and stealthily ....

I did find Dr. Michael Levy at Johns Hopkins Univ. Med. Ctr. in Baltimore, MD. He runs the SS clinic there. He is starting up a clinical trial this Fall - his third, I believe - and this medicine binds all the iron in the dura and CSF and gets rid of it .. It looks promising. I will also have to have a CT Myelogram to see if there is bleeding currently ... and if they can stop it. How the HELL do these things happen ???? WHY? I was not a crazy, risk taking kind of person. I had the dumb luck to inherit a joint disease (and pass it on to my two daughters who have so much fun to look forward to now...)

I'm a good person who puts others first all the time. I'm an artist who constantly gives my art away ... I have literally given my furniture away to people who had nothing. So why do people like me get so sick and have to suffer so much ... and not just ME .. MY FAMILY!!! They didn't ask for this !

I hope this note isn't full of typos cause my eyes are not working very well at the moment. Please forgive the errors. If there are other SSrs out there ... suffering from this insidious Superficial Siderosis (or Hemosiderosis ..as is also known as) .. please let me know you exist! I FEEL SO ALONE HERE. thanks.

i just would like to say you are such a beautiful person
so brave, inspired me even more
your plate so full and keep going
a mother in itself, is, a hell of a job
but your right
i find myself apologizing
for situations my condition puts them thru
you are still thinking of others first
it is your nature
like myself and my sister have this genetic let down that certainly *****
and what my children need to be aware of is, just like a good mom would worry about
but it is you going through an exhausting journey is enough and has me in tears
may you experience happiness and as much comfort you can find
hope your family is your #1 in your life and have great doctors who know (you know)
sending you an overload of hugs
positive place you are at here
i have this forum that gives me what i need
i have worked all my life
not being able to do so is like a death
it is extremely difficult
one day at a time
lots of love

:(
 

I am so sorry. You and your family will be in my prayers.

Welcome aboard!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

As you can tell there is number and caring fellow members here to assist you. Our shoulders are here for support in many ways. Check into this forum there you should read up on.

http://neurotalk.psychcentral.com/sh...cial+Siderosis

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Want to become a member ... and more ....
 

Darlene ... Thanks for the welcome ...
How do I become a member, rather than a visitor ... this site is so hard to navigate ! I know that what I have is so rare .. but I know that there are others out there like me ... and if they Google this disease, they will come up with your site. There is no sub-site for my disease ... I didn't even know what to post it under. Any ideas ??? Thanks ....

SS
 

I heard about my SS 3.5 years ago after countless seizures and never got any details from any docs, as they can't be asked to explain anything, as they ride on their mega-galaxy-wide neurospecialist salary, and limitless lives, laughing, as such clever people who are the 'people who help', like the one-dimensional schoolground nurses with noses in the air, who like to laugh a patients, and force them to do things they don't want to do

Hello & Welcome!!
 

Mike,

Hello and welcome, :Wave-Hello: happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, welcome to a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

SS
 

Mike ... please ... tell me more ! Tell me *your location*, how old you are, what are your other symptoms? How did you come to find out that you have SS? I know you are angry .... very angry .... you're seeing the wrong doctors obviously. I saw a few and wrote them off the minute I walked out the door. My anger turns to revenge. I will tell anyone who asks for a referral, or even mentions names in a conversation, the neurologists to stay away from and WHY. **. And I'm happy to do so.
Please keep posting ... so I won't feel so alone here. I want to see if there are more than the supposed 11 or so people in the United States. The medication was just approved by the FDA a week before Christmas. You need to get your butt to the Mayo Clinic (Dr. Kumar) or Johns Hopkins (Dr. Levy) to get that medication. You can choose whether to participate in the clinical trial with Dr. Levy or not ... you will still be treated regardless. I'm going on March 14 to Dr. Levy. I am praying there is a rainbow at the end of the road to Baltimore!

Eva. I am so sorry. For some weird reason I didn't see your post before now Thank you for responding. You are so eloquent and hit it spot-on girl. I would love to continue to use this thread with you if you're up to it. I'm really tired and I tremendous pain right now - had to have my knee replacement revised. Damn thing was loose ! So I'm notgoing to make much sense. Please tell me your story. What's going on with you? I would love to hear back. Thanks!
Marybeth