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MISS DIAGNOSED FOR 15 YEARS

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Posted 6/8/2007 12:37 AM (GMT 0)
I moved to Sacramento fifteen years ago and my new doctor said I had Relapsing Remitting and I was treated for that. I moved back to southern Cali (yea best thing I ever did) and the specialist tell me I have Chronic Progressive and it was too late to put me on any meds. I don't know anyone here and live in Stevenson Ranch. What to do? 

(mod. note: Just replaced caps with lower case for easier reading.)

Post Edited By Moderator (rhondab) : 6/7/2007 7:11:28 PM (GMT-6)

Posted 6/8/2007 1:15 AM (GMT 0)
Hey Brightongal!

Welcome to the board! I"m glad to see u've found us and hope u'll find the support and information u may need here. There are lots of wonderful people here who are more than willing to help in any way they can.

I see u say u've moved to a new area. Are u looking for MS support groups? U may find it helpful to contact the MS Society to see if they have a local support group that meets close enuf to u. Take care and let us know how u are. Again, welcome to the board!
Posted 6/8/2007 4:56 AM (GMT 0)

Hey brightongal,

Where is Steveson ranch????  I live in south orange county.  Isn't that near Santa Clarita Valley???  Isn't it hot out there?  How do you manage the heat?  I don't understand "it is too late for meds".  That doesn't sound right to me.  Welcome to the board.  I am glad you found us.  I hope it helps you feel connected.  I have gotten great support here and wonderful information. 

Love and prayers,

Posted 6/8/2007 9:58 AM (GMT 0)
Were you "misdiagnosed" or is it more a matter of -- after 15 years, your MS has progressed, and now you are chronic progressive? While some doctors might keep you on the meds anyway, others have decided that they aren't effective for people now labeled "chronic progressive", and so they'll stop them. You could always look for a different doctor.
Posted 6/8/2007 5:11 PM (GMT 0)
Thank u people um--It didnt progess, my first diagnose 25 years ago with chronic progressive when i moved to sac the doctor there said I waz relapimng remmitting I should have demanded a mri but never persued it,just to tired.
Posted 6/8/2007 9:41 PM (GMT 0)
Hi Brightongal,

 

    Welcome!  I'm sorry for your situation.  It's interesting that he uses the term Chronic Progressive, as most doctors break that down further into the secondary progressive or primary progressive catagories.  Secondary progressive they will treat same as RRMS, but primary progressive it depends on the doctor.  My husband has the later type and his neuro put him on Copaxone anyway even though there are currently no officially approved treatments for it.  He's doing quite well.  I wish you my best, and please feel free to join in on the forum topics anytime.

 

 

Kimber

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