EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
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I had just turned 47, it was August and I was ambushed into seeing doctor (I was blowing off what I thought were unrelated, minor symptoms which would go away themselves). I was 'misstepping', double vision, little things, I thought. I knew nothing about MS because I didn't know anyone with it. Had MRI's late Sept., and got immediate dx of PPMS in 10/01, with rapid progression.
I was sent to MS Specialist. Did 16 monthly Cytoxan (chemo) IV. I'm currently on Methotrexate, but don't feel it is slowing progression any. Less than 3 yrs. since dx, but I wear AFO (brace) on right leg, can walk a bit with forearm crutches or 4-wheeled walker. Use W/C for any distance (if I have a pusher), and rent or use scooters where available. I am maxed on spasticity meds and right leg still too spastic, so I have Botox (botulism) injections in it every 3 months. My right hand/arm is weak, numb, with no fine motor left in it, more like a paw (luckily, I'm a lefty). I take a lot of pills 4x a day! Mostly symptom meds (bladder, depression, pain, etc.).
So, I progressed fast, had to educate myself fast, because when I was dx'd, I was clueless. Past denial (my symptoms are with me 24/7), but probably stuck a bit in that anger/bitterness stage. Instead of starting a freer stage of life (youngest going off to college in fall), I'm imprisoned in my own body.[/b][/i]
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Mon Jul 19, 2004 2:38 pm Post subject:
Nabisco, welcome to the community... we're very happy to have you with us! Let me know personally if there's anything I can do to make this a more useful resource for you. As your MS seems to be an aggressive one, you may want to explore the possibility of using adjunct/experimental treatments that our members are talking about such as minocycline or LDN.
Joined: Jan 30, 2004 Posts: 85 Location: Devon - England
Posted: Tue Jul 20, 2004 12:14 am Post subject:
Hi Nabisco,
Welcome to the group. It sounds as though you have plenty to keep you busy, but please keep coming back to visit. There is so much information here, and any questions are often quickly answered.
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, RRMS, and diagnosed less than a year, so I'm in that "educate yourself fast" mode that you mentioned.