What was your MS "Trigger"

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

What was your MS "Trigger"

Postby EJC » Tue May 10, 2011 10:52 am

Over the last 18 months since I first found CCSVI and managed to get Emma treated I've spoken to many other pwMS both real world and on line.

One thing that almost every single person mentioned was an "event" that triggered the MS.

Emma's was falling down a flight of stone stairs on holiday and seriously injuring her leg.

Other friends have mentioned minor operations, child birth, a viral infection.

So what was your trigger if you had one?

And has anyone ever done any research on this kind of thing?
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Postby patticake66 » Tue May 10, 2011 11:01 am

If someone can, please explain to me how an "event", which supposedly triggers MS, is anyway related to the theory of CCSVI. If CCSVI is based on the notion of iron deposition and the immune system "cleaning it up", how is a hurt leg, viral infection, etc. a trigger? Please clarify.
Thanks!!!!
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Postby Hockeydad » Tue May 10, 2011 11:09 am

My trigger was an overly exhaustive workout. Next day all the tingliness and numbness started.
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Postby Bethr » Tue May 10, 2011 11:15 am

My trigger was an iron overload. I believe my sisters was a course of iron injections given to her as a teenager.
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Postby HappyPoet » Tue May 10, 2011 11:56 am

I've had lifelong neuro symptoms.

Many kinds of "events" can make me have pseudo-exacerbations (flaring of old symptoms) and real exacerbations (appearance of new symptoms):

Heat and humidity, lack of sleep, bacterial and viral infections, fevers, broken bones, dental work (excluding regular cleanings), surgery, giving birth, overdoing it, stress of all kinds, traveling, and more.

My worst exacerbation was caused by the "Tysabri Rebound" AKA IRIS (Immune Reconsitution Inflammatory Syndrome)

http://www.medpagetoday.com/Neurology/M ... rosis/6674

http://www.investorvillage.com/smbd.asp ... d=10150727

Conclusions In this cohort of patients with MS who had disease refractive to multiple therapeutics before starting natalizumab treatment, magnetic resonance imaging and clinical disease activity returned, often aggressively, following discontinuation of natalizumab therapy. These findings suggest we should consider strategies to minimize the risk of immune reconstitution inflammatory syndrome after natalizumab discontinuation.
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Postby EJC » Tue May 10, 2011 12:24 pm

patticake66 wrote:If someone can, please explain to me how an "event", which supposedly triggers MS, is anyway related to the theory of CCSVI. If CCSVI is based on the notion of iron deposition and the immune system "cleaning it up", how is a hurt leg, viral infection, etc. a trigger? Please clarify.
Thanks!!!!


We don't understand fully what CCSVI is and why it does what it does, come to that we don't understand MS either.

I'm no more likely being able to demonstrate that trigger has anything to do with MS in the same way as you're unlikely to demonstrate that an event has nothing to do with it.

Just thought I'd ask the question, if enough people answer with similar situations it may be silly enough to tirgger a train of thought.
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Postby 1eye » Tue May 10, 2011 12:51 pm

I know, even I am tired of all the posts from me lately, but since this one is not about Serono I thought it might be interesting...naive, I know.

My second event was a bizarre one. I had been in the silly habit of falling asleep on the couch in front of the television. This night, for some reason, I fell asleep without the usual benefit of a cushion or pillow under my head. Pragmatically, I used the arm of the couch, which was essentially no more than a plank of wood. During the night, I rolled over, and took the weight of my head, neck, and upper torso on the other side of my neck, somewhat relieving the first side. By the time I got up I had a pretty sore neck. I didn't really get much sleep.

All this happened so long ago I can hardly remember (early 1989).

Eventually that day I noticed my left pinkie was numb. I did not connect it with the hardwood pillow at first, but since I played guitar and since it persisted until this day, I went over it in my mind a few times.

My first event I really can't remember too well. I had an attack, probably precipitated by the hot day in an electonics lab. In those days a lot of hand-drawn work was still done, and I found I could not draw a freehand line, where I had been able to the day before. It was so ephemeral that even after CAT scan etc., every doctor I saw thought I was nuts. Except at the very end when I described to a neurologist a funny symptom where instead of putting my key in my doorknob, it went around in circles. He named the symptom, but I never found out the cause.

Part of the problem was this: I always got to wait, in an air-conditioned, cool room (it was July) to see anyone. So by the time I did, I had cooled off and had no more symptoms. It might come back in the car on the way home. I think now that it was triggered by the July heat, but at the time, nobody had a clue. It cleared up by itself about six months later, and did not appear again until the pinkie, so that was 7 years of remission.

At the time of that first attack, with its keyhole intention tremor, a friend was in a diving accident and broke her neck. She is now a so-called "walking quad" because of the site of the injury, and quick and expert neurosurgery (coincidentally by the same guy who put the hydrocephalus shunt in my brother's neck in the early sixties). Anyway when she was recovering from surgery I went to see her. I told her about my numbness since that was the extent of my news. Lying there with her neck broken she said don't worry, I'm sure they'll figure it out. We are still good friends. CCSVI may even be something she could use, who knows? Her symptoms are eerily similar to mine. She has prepared me for what was to come.
"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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Postby EJC » Tue May 10, 2011 12:57 pm

You were right, it was a far more interesting read than another Serono post :wink:
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Postby Loobie » Tue May 10, 2011 1:12 pm

Interesting thread. I don't know how any of us can say what 'gave us' our MS. I mean what about all the people who MS just hit them out of nowhere? I think saying something triggered your MS is an exercise in futility. How do you really know?
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Postby HappyPoet » Tue May 10, 2011 1:22 pm

patticake66 wrote:If someone can, please explain to me how an "event", which supposedly triggers MS, is anyway related to the theory of CCSVI. If CCSVI is based on the notion of iron deposition and the immune system "cleaning it up", how is a hurt leg, viral infection, etc. a trigger? Please clarify.
Thanks!!!!

Not all neuro symptoms must be 'MS." I believe my neuro symptoms are caused by a combination of CCSVI and CCVBP (Chronic Craniocervical Venus Back Pressure).

EJC, your wife's fall down that flight of stairs might have hurt her neck and given her CCVBP, even if she never complained of pain. If you haven't already, you might want to read this thread started by Dr. Flanagan, uprightdoc: CCSVI and CCVBP

A quick summary of CCVBP is that, for many possible reasons/causes, the foramen magnum (opening of the bottom of the skull) does not sit properly on the first vertebra, the Atlas, thereby causing nerves, veins, and/or arteries to become pinched which can cause all sorts of problems.

My personal CCVBP story is that many downhill slalom skiing wipe-outs caused my head to become tilted in two directions! Upper Cervical chiropractic Atlas Orthogonal treatments (one of several methods) made 95%-100% of the numbness in my feet disappear so I could walk again and took away 75% of my "shark bite" torso pain so I could get out of bed again.

I still do have other neuro symptoms, but at least now, I can get out of bed and walk around with my head on straight. ;)
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Postby pklittle » Tue May 10, 2011 1:41 pm

My first bonafide MS "event" was a really scary bout of optic neuritis after I came back from a Disney cruise in the Caribbean with my son and husband. I wasn't diagnosed with MS though for about another 8 years!
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Postby thisisalex » Tue May 10, 2011 2:18 pm

My first sign of MS was a vascular issue… In 2000 I had a stroke-like attack, you can read about it here:

http://www.thisisms.com/ftopic-9242-0-d ... rasc-.html

since then i have read about Vertebrobasilar insufficiency which could have been my first attack... http://en.wikipedia.org/wiki/Vertebroba ... ufficiency

alex
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Postby civickiller » Tue May 10, 2011 2:22 pm

My first event was me doing head hand stands and falling over. But I did have neck flex shocking sensations before my first event which makes me believe a fall event that happened 12 years before and that's why I believe have benefited from upper cervical care
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Postby EJC » Tue May 10, 2011 2:25 pm

Loobie wrote:Interesting thread. I don't know how any of us can say what 'gave us' our MS. I mean what about all the people who MS just hit them out of nowhere? I think saying something triggered your MS is an exercise in futility. How do you really know?


I'm not suggesting the event "gave" people ms per se.

The reason I posed the question is so many pwMS have said to me "oh yes, I had my apendix out and didn't leave hospital for another 3 months" or "I had a virus and that was it - I'm diagnosed with MS". You get the idea.

I was genuinely curious how many people associated the first serious episode of MS with a physical, viral or other some such event. It's something I notice each time I speak to someone with MS that's I've never spoken to before - their explanation of diagnosis and time frame always seems to be accompanied by an "event".
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Postby LR1234 » Tue May 10, 2011 2:27 pm

My trigger was minor operation and a bad reaction to the general anasethic.
Had mono/glandular fever the year before the op which I think contributed.
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