I now have a theory about what happened to my wife.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: I now have a theory about what happened to my wife.

Postby DougL » Wed Jun 05, 2013 4:59 am

three weeks and this time she needed an adjustment. nothing major so things are still holding quite well.

a little different going to see doc this time. in the past, i would drive to front door, get out and assist my wife to get inside the front door. she would wait there till i parked the car, then we would walk to the office waiting room (100 ' maybe).

this time when i got inside the building, she had already walked the 100' and was already with the doc.
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Re: I now have a theory about what happened to my wife.

Postby DougL » Thu Jun 13, 2013 6:12 am

now i am lost again. stupid disease.

my wife is labelled SPMS. years ago, she stopped having recovery and started the steady downslope. no more major attacks but no more recovery. its been close to 10 years. it had gotten to the point where she is unable to walk without assistance.

in the past 2 or 3 years, I know of 3 episodes of 100% complete remission. not even like when she was RRMS and finished her treatment and was feeling "normal" again. her exact words "i wouldn't know i ever had MS" kind of recovery. the latest was two nights ago. sometime around 10 pm, she started to do a little work around the house and then it happened.

no drugs, no CCSVI surgery, no AO. just all of a sudden MS is gone. she was so excited she stayed up till 4 in the morning doing stuff.

when we talked about it i almost cried because I had to tell her I don't know why it is happening. but she was happy when I said that the fact that the numbness can 'go away' means it might 'go away' and stay away someday.

stupid disease.

on another note, fampyra is not doing anything. almost done the full month.

stupid drugs. stupid disease.
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Re: I now have a theory about what happened to my wife.

Postby 1eye » Thu Jun 13, 2013 7:45 am

The best established medicine can tell you is she *had* SP"MS" but that sometimes these people have occasional remissions or placebo effects. Nobody ever goes back from "SP" to "RR", apparently. I think it's a scam, and that there is no such a thing, as "SP", or "RR". Not helpful, I know, but it's a disease, self-worsening, doesn't normally go backward forever, and it worsens as you age. Logic says, enjoy whatever you have left.

But I think this thing is a lot closer to being figured out than established medicine tells. Maybe that's denial. If so, I guess it's a constant threat. I thought I was through denial and out the other side. I still have benefits that haven't worsened again since 2010. Not many, but some, and good ones. I hope you have more improvements.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: I now have a theory about what happened to my wife.

Postby dania » Thu Jun 13, 2013 8:16 am

Doug, I would encourage you to have Dr Flanagan review your wife's X rays, scans etc to see what and who would be the best to treat your wife. He looked at my upright MRI and saw that my spine in my neck and lower back was curved forward. Cervical lordosis and kyphosis. He found a chiro with a Cox 7 table for spinal decompression. That was what he recommended for me. And is does help me, a lot. Straightening my spine is eliminating the tension, MS hug, allowing me sit straight (in a wheelchair), stronger etc.
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Re: I now have a theory about what happened to my wife.

Postby aliki » Thu Jun 13, 2013 2:35 pm

if someone has that kind of problem is that possible to get over it someday with the help of a chiropractic or every time a new treatment is needed?
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Re: I now have a theory about what happened to my wife.

Postby vesta » Fri Jun 14, 2013 3:01 am

Hi Aliki: I'm no expert on Chiropractic, but normally if there is a skeletal deformation - like scoliosis for instance- a series of treatments should correct it. It seems that correcting the Atlas and cervicals should be the same. ??
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Re: I now have a theory about what happened to my wife.

Postby Rosegirl » Fri Jun 14, 2013 4:43 am

DougL

Over the years, I have had many versions of mini-complete remissions. In my case, walking is my only complaint. My left leg doesn't want to bend at the knee or the ankle. It will bend, but it's stiff and that makes my gait very slow.

Until three years ago, occasionally, I could walk perfectly! Unfortunately, it would only last a minute or two -- enough that I was sure it happened, but I could never make it last. There was no pattern of when or why it happened.

That stopped happening when I had my first angioplasty three years ago.

Until April when I first used the Aqualizer (small plastic device that rests along your upper gums and keeps your molars slightly separated. That day, for the afternoon, I still limped, but I was moving at twice the speed I usually do. And then it ended and hasn't come back, just like all those other times.

But something is going on because both my bladder and bowel habits have changed a lot for the better. What's different now is that the chiro is finally using one of those special tables and I'm consistently using both the Aqualizer and the tissue trick.

Go figure. . .
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