Introducing Myself, moving to SPMS?
Hi,
So Happy to find you all, and of course sad if you are here, not wanting to be. I don't want to be; my whole life ironically (am in mid 50's) has been about helping others, both in paid work, at a Children's Hospital, in Child Life Dept., and in volunteering, from age 5! (March of Dimes, back in the day when a 5 yr. old could safely walk around the neighborhood! My Mother couldn't do it, as my Brother was an infant.)
Ironically, the last person I delivered Holiday meals to was a Woman, Lovely, who had movement left only in her thumb. She was thrilled to talk, and joined the Local Art Museum Talk Group for people who could not get to the exhibits.
After (difft. periods) optic neuritis, 21 straight days of severe dizziness, neurogenic bladder, partial loss of hearing, tremors, balance issues, winding up on scooter, pure exhaustion, restless leg, PN, etc., all from late 90's to 2000, I had the usual tests; but I'm allergic to Gadolinium, have scoliosis so badly it's hard to do the punctures, or see anything! So CSF, those evoked potential tests, other tests, symptoms, wound up w/ my Neuro's Neuro in training crying when she dx'd me w/ RRMS. I then had a bad experience w/ Copaxone (lasted 6 mo.), so my treatment then was the 3 days (home, thank goodness) of IV Solumedrol, every three months?? I cannot remember.
It's been a long, long time since I have "dealt" w/ my MS: I have other AIs, I can give out a disease list, but I don't think of myself this way; I still, in my dreams, drive (eyesight not good, reaction time not so either, and colorblind!
), dance, run around, work, etc. I still hold out hope that will happen! Hey! I got back to walking in mid 2000's, though am on walker and in wheelchair on bad days. (Really bugs me that we traded in my SUV w/ scooter fitting, etc.!)
My Husband is my Best Friend (since H.S.!!), he even reminded me of this site: I have sort of jumped back in, because it seems I have SPMS, no breaks, everything worse, and all of a sudden too, all at once. But it's NOT as bad as I have seen, so I am here to learn, I hope to do more helping; and maybe someone even lives down this way in S.E. Florida!
We have two grown Daughters, three Grandchildren right up the road, living w/our Oldest Daughter and her Husband; and the two other "Loves" of my Life are my "service" Pug, and my new "service" Chihuahua, a puppy!
Sorry if that was boring, or same old, same old, but I figure it helps "place" me, whatever that means! (And I too, was so sad and scared watching the UTube w/ Annette Funicello.
If I had one question it would be what do women take (prefer) for what is now, in last few months, total urinary incontinence? I have a Urologist to see, years ago used Oxytrol patches for far less, but I have been so blessed that there really were several years w/o much going on, except a lot of optic neuritis in my right eye.
I see my Neuro in June, but am thinking of trying to get in earlier. Thanks for reading; I DO hope to help MUCH more than write about myself! Be Well, Elisheva
** 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. **
So Happy to find you all, and of course sad if you are here, not wanting to be. I don't want to be; my whole life ironically (am in mid 50's) has been about helping others, both in paid work, at a Children's Hospital, in Child Life Dept., and in volunteering, from age 5! (March of Dimes, back in the day when a 5 yr. old could safely walk around the neighborhood! My Mother couldn't do it, as my Brother was an infant.)
Ironically, the last person I delivered Holiday meals to was a Woman, Lovely, who had movement left only in her thumb. She was thrilled to talk, and joined the Local Art Museum Talk Group for people who could not get to the exhibits.
After (difft. periods) optic neuritis, 21 straight days of severe dizziness, neurogenic bladder, partial loss of hearing, tremors, balance issues, winding up on scooter, pure exhaustion, restless leg, PN, etc., all from late 90's to 2000, I had the usual tests; but I'm allergic to Gadolinium, have scoliosis so badly it's hard to do the punctures, or see anything! So CSF, those evoked potential tests, other tests, symptoms, wound up w/ my Neuro's Neuro in training crying when she dx'd me w/ RRMS. I then had a bad experience w/ Copaxone (lasted 6 mo.), so my treatment then was the 3 days (home, thank goodness) of IV Solumedrol, every three months?? I cannot remember.
It's been a long, long time since I have "dealt" w/ my MS: I have other AIs, I can give out a disease list, but I don't think of myself this way; I still, in my dreams, drive (eyesight not good, reaction time not so either, and colorblind!
), dance, run around, work, etc. I still hold out hope that will happen! Hey! I got back to walking in mid 2000's, though am on walker and in wheelchair on bad days. (Really bugs me that we traded in my SUV w/ scooter fitting, etc.!)My Husband is my Best Friend (since H.S.!!), he even reminded me of this site: I have sort of jumped back in, because it seems I have SPMS, no breaks, everything worse, and all of a sudden too, all at once. But it's NOT as bad as I have seen, so I am here to learn, I hope to do more helping; and maybe someone even lives down this way in S.E. Florida!
We have two grown Daughters, three Grandchildren right up the road, living w/our Oldest Daughter and her Husband; and the two other "Loves" of my Life are my "service" Pug, and my new "service" Chihuahua, a puppy!
Sorry if that was boring, or same old, same old, but I figure it helps "place" me, whatever that means! (And I too, was so sad and scared watching the UTube w/ Annette Funicello.
If I had one question it would be what do women take (prefer) for what is now, in last few months, total urinary incontinence? I have a Urologist to see, years ago used Oxytrol patches for far less, but I have been so blessed that there really were several years w/o much going on, except a lot of optic neuritis in my right eye.
I see my Neuro in June, but am thinking of trying to get in earlier. Thanks for reading; I DO hope to help MUCH more than write about myself! Be Well, Elisheva
** 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. **
)
) that I must have done something wrong, or not read Guidelines closely enough! Should have thought of my own reading problems!!
I like when someone introduces themselves with their MS history 
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