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.
User avatar
DougL
Family Elder
Posts: 384
Joined: Mon Jul 11, 2011 2:00 pm

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

Post by DougL »

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.
User avatar
DougL
Family Elder
Posts: 384
Joined: Mon Jul 11, 2011 2:00 pm

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

Post by DougL »

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.
User avatar
1eye
Family Elder
Posts: 3780
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

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

Post by 1eye »

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.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
User avatar
dania
Family Elder
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

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

Post by dania »

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.
aliki
Family Member
Posts: 26
Joined: Tue Nov 01, 2011 1:40 am
Location: Greece

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

Post by aliki »

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?
vesta
Family Elder
Posts: 729
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France
Contact:

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

Post by vesta »

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. ??
User avatar
Rosegirl
Family Elder
Posts: 261
Joined: Sat Jan 23, 2010 3:00 pm
Contact:

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

Post by Rosegirl »

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. . .
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”