Repost: secondary progressive

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odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 8/21/2010 7:36 AM (GMT -6)   
after viewing recent mri, neuro dx me with secondary progressive. took me off ivig because it doesn't seem to make any difference. now on ampyra, but only for about a week. awoke in the night to terrible leg pain and cramping toes on ms leg, so may be time for botox again. in general feeling very wobbly and tired. neuro also recommended therapeutic riding. wondering if anyone on list has any input on any of this.  linda

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 8/21/2010 9:59 PM (GMT -6)   
Linda,
 
I am very sorry to hear this.  I dread that eventual ( for most of us anway ) transition to secondary progressive.  I don't have any experience with it obviously.  I am sorry!! 
 
Do try the therapeutic riding.  I ride my own horse.  It does wonders for core muscle strength and can really help with walking.  Give it a try!!!
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 8/22/2010 11:01 PM (GMT -6)   
Hi Linda,
 
Thank you for clearing up a number of things re: spms and  its progression. I  agree that it is a very different phase of this disease. I have been done therapeutic riding in the past and I highly reccommend it.
 
Iam almost totally incontinent now. It is a very humbling situation.
 
Tell me about your botox treatments. I have no drug plan, however,  I  would to try it.
 
Have you thought about the liberation treatment?
 
 
Hope to hear back from you.
 
Dale

odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 8/28/2010 10:23 AM (GMT -6)   
botox worked well to stop nightly cramping and spasms in calf and toes. about time for a refresher. shots hurt but neuro had someone spraying area w/numbing agent. worked immediately. had been that i'd have bad searing cramps in left calf and toes... would feel like toes were trying to cross over each other. spasms didn't last long, but would repeat.
 
gotta love ms... always something new except a cure. now my left foot falls asleep for no apparent reason whether standing or sitting. also the ants are back but on my arms and these bite. gone for now and hope they stay that way. that happened when i was driving, which i rarely do.
 
sorry to hear about your "other" problem. only had it a couple of times and during night.
 
so far making do w/braces on both legs plus cane. call the latter my fashion statement. have one called michael ca(i)ne that i use around the house and when i need extra support. also have a clear lucite one.
 
do you find daily things almost overwhelming, like paperwork, making appointments....etc. even food shopping is too much.
 
may ask neuro about liberation but not sure. looking forward to therapeutic riding if i ever sit down and fill out the forms.  
 
good luck.

DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 8/29/2010 12:33 PM (GMT -6)   
Hi Linda,
 
Yes, I definitely have problems with doing the mundane things that I did so easily in the past. Multi-tasking was my forte, not anymore! Fatigue seems to be a no win situation. Ants I can relate to...grrrr!!  Hands and fingers numbness is a is always rearing its ugly head. Vertigo is my constant companion.
 
I would love to be able to be with my only grandchild, but, I don't thik that my daughter-in-law really feel that I am a incapable of looking after her.
 
Could you please fill me in futher on botox therapy?
 
Thanks so much.
 
Dale
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