All About ME
Hello everyone
Let's see what to say about me??? wellll I would say I am not your typical, if there is a typical MS'er.
I went blind, totally blind in my right eye April 29, 2000. I lost all depth perception and equilibruim in my left eye as well...via MRI's, evoked potential testing, lumbar puntures, blood tests etc etc etc,,,I was diagnosed April 2001 with r/r. I tried Betaseron for a couple years, it didnt do anything to slow down this MonSter. I then tried Novatron (chemo) again nothing slowed this down. My last kick at the can was Copaxone and yet again strike three....
2006 I became SPMS. I became fed up with "proven" MS treatments and no treatments approved for SPMS so I started to research and research and found articles on CCSVI... I ended up having my first CCSVI procedure done in Tampa Florida Dec 2010 ..
I would say it showed promising results but they didnt last. I had my second procedure Dec 2011 and no results this time. I rode the wave of frustration, depression, confusion for a couple years till I heard about Lyme disease and the link to MS...again my research went into full blown mode..
I found a lab in California, Igenix. I sent my blood and it came back positive for late stage Lyme disease. I began treatment with a medical dr. in Plattsburg NY. I stopped last June as my bank account just couldnt take it anymore. I wasnt showing any great improvements either I must say. I also go to a naturopath who put me on a brand new "fringe" treatment called LDI (low dose immunotherapy). I have been on this since August 2015. I cant say if it is working or isnt. I havent had any positive improvements but I havent gone down hill either so who knows....
At this point since my initial MS diagnosis I have paid over $60,000 out of pocket as we have no coverage or benefits for approved and not approved treatments/procedures etc... I stay hopeful, determined but I am getting weary.... if one more person says to me I have the perfect personality to have MS I am going to scream....
oh my eye sight did come back. I have on going ON (optic neuritis) I use a wheel chair out of my home but do ok in my home using walls and furniture to balance my shuffle walking...
my bladder sucks, my bowels are not playing nice now.. I get awful muscle spasms in my legs , now my arms, and the wonderful "MS HUG". My cognitive doesnt function most of the time but my sense of humor and smile do...
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Let's see what to say about me??? wellll I would say I am not your typical, if there is a typical MS'er.
I went blind, totally blind in my right eye April 29, 2000. I lost all depth perception and equilibruim in my left eye as well...via MRI's, evoked potential testing, lumbar puntures, blood tests etc etc etc,,,I was diagnosed April 2001 with r/r. I tried Betaseron for a couple years, it didnt do anything to slow down this MonSter. I then tried Novatron (chemo) again nothing slowed this down. My last kick at the can was Copaxone and yet again strike three....
2006 I became SPMS. I became fed up with "proven" MS treatments and no treatments approved for SPMS so I started to research and research and found articles on CCSVI... I ended up having my first CCSVI procedure done in Tampa Florida Dec 2010 ..
I would say it showed promising results but they didnt last. I had my second procedure Dec 2011 and no results this time. I rode the wave of frustration, depression, confusion for a couple years till I heard about Lyme disease and the link to MS...again my research went into full blown mode..
I found a lab in California, Igenix. I sent my blood and it came back positive for late stage Lyme disease. I began treatment with a medical dr. in Plattsburg NY. I stopped last June as my bank account just couldnt take it anymore. I wasnt showing any great improvements either I must say. I also go to a naturopath who put me on a brand new "fringe" treatment called LDI (low dose immunotherapy). I have been on this since August 2015. I cant say if it is working or isnt. I havent had any positive improvements but I havent gone down hill either so who knows....
At this point since my initial MS diagnosis I have paid over $60,000 out of pocket as we have no coverage or benefits for approved and not approved treatments/procedures etc... I stay hopeful, determined but I am getting weary.... if one more person says to me I have the perfect personality to have MS I am going to scream....
oh my eye sight did come back. I have on going ON (optic neuritis) I use a wheel chair out of my home but do ok in my home using walls and furniture to balance my shuffle walking...
my bladder sucks, my bowels are not playing nice now.. I get awful muscle spasms in my legs , now my arms, and the wonderful "MS HUG". My cognitive doesnt function most of the time but my sense of humor and smile do...
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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