not that science is wrong, but that people do science, and people are human.
I won’t quote everyone in thread who has brought up thoughtful and legitimate points, but i want to offer another paradigm.
Science likes concrete evidence, so researchers look for some measurable change in the bodies in patients who have a particular disorder, right? With MS, research turned up pictures of lesions in most patients who are considered to have MS. all the focus went on the lesions, because that a provable change (what with having pictures). nevermind that the number and location have little correlation to specific symptoms or levels of disability (with exception of PPMS, which tends to show much more lesions and more in the spine, less in the head).
the problem is that hardly anyone is listening to the patients. most of the MS folks I know or have read from online had relapsing-remitting symptoms most of their lives. at least some of them had MRIs in the past that showed no lesions; they were told no MS until later lesions showed. that’s part of why Dr. Zamboni’s theory makes so much sense to me. it’s first thing I’ve gotten excited about since I was diagnosed.
so, i don’t think there’s a consipracy of doctors who’ve been paid off at all. i just think that overall medical research overemphasizes concrete evidence and minimizes or ignores a wealth of available data…the patients’ actual experiences. it is made harder because most of us are afraid to tell our doctors too much of what we’re going through because mebbe we’ll sound crazy, or we are too timid to question our doctors too much.
anway, that’s one thing that’s keeping us from finding cures for various things: we get boxed in by overfocusing on physical evidence and think of it as an initial cause.
my own body is fightin’ my brain. seems like to me, if i got blood backflowing into my brain where it leaks iron into tissue where it doesn’t belong, that might make my little immune guys try to get in there and get it out. or maybe it works differently than I imagine, but it still makes more sense than “MS is the autoimmune system attacking myelin”. Yah, that’s one component of the disease, but no more the “cause” of the illnesses than flour is the “cause” of cake.
ok i *really *gotta go lay down now…sorry for typos
Surgery was done yesterday. I call it surgery and technically it is, but it took less than an hour and my wife was awake through it all. She has a bruise on her leg and a small puncture where they entered to the vein in her leg.
In her right jugular they found a stenosis that they fixed with a balloon. They expand it for 1-2 minutes and check to see the results with a dye. Before angioplasty the blood would drain like from a sink, it would swirl down the vein. Afterwords, it drained like an airplane toilet. Whoosh! Immediately, my wife reported the numbness that she normally experienced in her right two outside fingers disappeared. She hasnt felt those fingers in years. She now can. No expectations of this happening, so it is unlikely to be placebo. On her right side: They injected the dye into her vein about half way up her neck between the jawline and her clavicle. The dye showed the blood refluxing back into her brain and swirling around into the back of her head before exiting back down the jugular and axillary veins. Normal? Not likely. They determined there were two blockages accounting for this. They used the balloon initially to see if they could open the lower one, but the balloon only bent in the middle as they expanded it. They then used another smaller balloon to open the upper blockage. At this point they went back to the first blockage and installed a stent at that location. Within 2-3 hours she had warmth back into her hands and feet. Today she has lost the spasticity in her shoulders and ankles. She tried on high heel boots at a local store and was able to walk in them (for some reason women with MS dream about wearing high heels) where she hasnt been able to for years. She can walk quite a bit better and can even put her pants on without having to use her hands to lift her right leg into them.
The questions I have at this point are:
Is this just a Flowers for Algernon phenomenon? Or is it permanent and progressive?
Why the hell did I have to fly all the way to Poland to get this simple procedure done for my wife!!!
Uzi, please keep the updates coming!
We have a family history of this, and both my mother and my aunt suffered through this later in life.
Will be interesting to know how things progress, and the long(er) term effects, if any.
My sincere wishes this stops the progression and even helps cure/stops some of the current effects your wife is having!
Be sure to check back with us weekly/monthly and yearly to let us know how it goes.
Speaking of which, will she have to go back for further procedures, or is this a one-time deal?
Side note: As of March 1st, in the US, there’s an option for those who don’t have access to this or want something else - the first FDA-approved treatment (not cure) for MS, Ampyra. It doesn’t work for everyone, and of course everything has side effects, but it might work for someone you love.
Just got back from Poland last night. This morning my wife noticed that when she ran her finger nail down the arch of her foot she got a twitch response. Hasn’t happened since her feet became numb years before. Now that she can feel them normal responses are returning.
She said the skin along her back and chest no longer has that ‘asleep’ feeling you get when you lay on your arm wrong. It was so prevalent that it hurt her when you touched her. No longer.
I noticed that she was standing more normal than before. Less ‘twisted’ due to the spasticity.
Frankly, the transformation is amazing. Being a skeptical type, I always had in the back of my mind the fear of the snake oil salesman or the homeopath who claims that their concoctions, even though they are completely diluted, are effective. I can’t argue with this result. I’ve seen it with my own eyes. I’ve felt the warmth in her feet and hands that hasn’t been there for the 8 years I’ve know her.
Okay, we’ve been back from Poland for 20 days.
Current results: Balance is back. She can now walk heel to toe across the room without falling over. She can close her eyes while standing still and not fall over.
She rode her bicycle a few days ago for the first time in 5 years and didn’t fall off of it. 4KM and while her right leg was a bit tired afterwords, she recovered in less than 1/2 an hour and then cleaned the inside of the house, then the outside. She then took the dogs for a walk. At 9:30pm, when she called me, she normally would be exhausted and ready for bed. She felt fine, as in normal.
The only issues now that separate her from those non-ms people is now that the spasticity is gone from her legs she has to learn how to reflexively control her ankles again, which were essentially locked and unfeeling before, to keep from tripping on uneven terrain. Her one leg getting tired gets better everyday.
I fail to see how this could be classified as remission or placebo given how much better she has become. She is more normal than most people classified as normal.
**Uzi **that is wonderful news! I am hopeful that she continues to see improvement and that this lasts for her! It must be so amazing and exciting for her.
And one more thing: her voice. Purely subjective on my part, but it seems her voice is more fluid. She speaks quicker and with more precision. It may be that she is happy with the results. It could also be a result of the surgery, too.
This is all very exciting news!! Hell of an improvement for “just” the placebo effect, for sure.
Whether the science ultimately decides that it’s truly a treatment for MS, or whether it fixes some other ailment that looks like MS, seems to be irrelevant in your case - the improvement sure sounds real to me!
Uzi - Thankyou for sharing your encouraging story. My wife has had MS for 30 years and and finally has some hope of getting some relief from this terrible disease. She has been part of an MS study at UBC and has been monitored continually since being diagnosed. She is on Rebif to reduce the hits to her brain, but her Relapsing Remitting MS has slowly progressed. She has all the usual symptoms of skin pain, no balance, extreme fatigue, depression, numbness in extremidies, eye damage (floaters, double vision, numerous retina tears, etc). Being a stong woman she has handled it with dignity, but is frustrated at the lack of progress by the MS Society. Even if they do studies, she will have a long wait to get treatment. We are anxious to take the path you and your wife have. I was hopeful that we could get this treatment here in Canada, but are willing to go abroad if necessary. I would appreciate any leads to anyone still taking patients.
I wish your wife continued improvement and thank you again for sharing.
No kidding - if a very small procedure leads to this much “placebo effect”, I’d still take it, based on the results his wife is seeing so far. My fingers are still crossed for all MS sufferers, that this will truly be a leap forward in treatment.
CCSVI Calgary is proposing a self funded study in Alberta paid for by patients (Essentially, why pay people in Poland, pay to be part of the study instead). http://www.ccsvicalgary.org/
Uzi, your story is very encouraging and we are on the brink of elation. We wife was diagnosed in 2003. She has a number of symptoms that having been hanging around for years (like fatigue, depression, drop foot, headaches, nausea,neuropathy in her left arm and left side of her face) and some that have thankfully been temporary (like losing her sense of smell and taste). Her neurologists are recommending to wait and see what the results of the full studies are before taking any action.
Given your description of the blood flow in your wifes neck before and after the procedure, it seems to make sense. ie. ‘stale’ blood recirculating in the brain, or not being refreshed enough.
I have been reading through the link above to ThisIsMS. A number of patients (mostly at Stanford) complained of pain in their head, neck and shoulders as a result of the procedure. Did your wife experience any of those?
I also see a number of patients where the procedure did not seem to be effective. I wonder if those simply had ‘blockages’ that were not evident in the imaging.
No pain. She did have a headache, but we went to the doctor and it was probably because of the blood thinners she was on after surgery.
Some people don’t have improvements. The hope with them is that they don’t get worse. If their are dead neurons there is slim hope that this procedure will resolve that sort of issue. Hopefully, with the body not fighting a state of permanent hypoxia it can find the resources to recover somewhat.
I still think there is a lot of work to do on this. People with RRMS tend to have the best results.
A link to an article by Dr. Marian Simka, the doctor in Poland who supervised our surgery, responding to a debate in Alberta. He explains it somewhat.
