Shoes, CCSVI and MS

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

Shoes, CCSVI and MS

Postby swynjones » Tue Sep 14, 2010 1:24 pm

Hi everyone

Reading up about CCSVI started me re-thinking about the time of my wife's very first MS attack. And about how sometimes we dont always share information about things because they seem silly or they dont seem to fit at the time with accepted wisdom of what MS is or what neurologists tell us it is. But I would be very interested if anyone has a similar story.

About 3 months before my wifes first MS episode she had bought a new pair of trainers/shoes, which were quite narrow so they would pinch the toes together, and the soles were not flat but had several bumps on which would possibly cause more pressure points on walking.

Anyway after about a week of wearing them her feet had gone numb. So she stopped wearing them and the numbness went after a few days. She wore them again about a week later and the same thing happened. So again she didnt wear them for a while until we were on holiday about 3 months later. The following day after a lot of walking in them she woke up with numbness from the waist down which over the course of the next few weeks the numbness spread upwards and badly affected her hands.

After an MRI scan she was given the diagnosis of transverse myelitis, and then a further 3 years later in 2007 after a relapse she was diagnosed with MS.

Back in 2004, after that very first episode, we were so convinced that this numbness was the result of bad posture or poor circulation caused by these trainers that we went to our first neurologist meeting carrying the trainers with us in a bag and we showed the neurologist the soles of the trainers and explained the history above. :D

As you would expect the neuro just laughed at us, sent my wife for an MRI and explained we were probably looking at the first attack of MS.

Anyway, over time I just put the trainer story down to coincidence becuse of what the neuro had said. But all the CCSVI stuff has made me think again because if MS is brought about by CCSVI then to me its not inconceivable that in certain susceptible individuals CCSVI could be related to postural changes brought about either through some injury (a fall perhaps) or as in my wifes case bad posture brought on my bad footwear.

I appreciate there is lots of speculative ifs here. But even so I'd be interested to hear if anyone else has had a similar experience and can pinpoint anything similar which coincided with their first attack.

I dont think we should ignore these cause and effect relationships even if they seem rather bizarre. And I think there is sometimes a risk that we dont share things because we think they will sound silly and the potential is that we miss something important.

thanks for listening.
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Postby ppicklee » Tue Sep 14, 2010 1:48 pm

Hi swynjones
I must say that I can't relate to footwear issues. I've never had any so I can't speak about that but maybe someone else will be able to shed some light on this for you. :-)
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Postby 1eye » Tue Sep 14, 2010 2:10 pm

I think there may be useful information there. Where it connects for me is in my first CCSVI clinically isolated event. Well, not my first, but that was 28 years ago and my memory is a little fuzzy.

21 years ago:
I was in the basement watching TV. Not wanting to lock up, but wanting to lie down, and not having a pillow handy, I lay down on the couch with my neck supporting a great deal of my weight. I flipped over during the night, and did this foolish thing at least once on each side of my neck. My neck was held up only by a block of wood, as the covers had gone missing off the ends of the couch. It was like sleeping on a railroad tie.

In the morning, besides a sore neck, I had a numb pinkie on my left hand. I went through 2 doctors, one ophthalmologist, and 4 neurologists, before it was identified. Though I had 'MS' I was just glad to have any kind of an answer.

I think it may be interesting to ask people: what were those 'first events' when you didn't even know what it was, and could any of them conceivably be posture-related? Can you see how your neck veins or back veins could have been involved?
"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 swynjones » Tue Sep 14, 2010 2:54 pm

1eye. many thanks. that's really very interesting.

exactly the sort of thing that I was interested to know. As I said my wife and I were totally and utterly convinced at the time that the culprit was these shoes and that it was a postural thing. And then of course we were made to feel stupid by a neuro waving an MRI scan in our faces.

But the CCSVI story is putting stories like yours and my wifes into a very different context.
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ccsvi

Postby blossom » Tue Sep 14, 2010 8:17 pm

i to this day can not say i have ms very easily. as a rule i say that they say i have ms. i had a bad wack to the base of my skull and neck in the mid 70's and my left fingers and my left toes were kinda numb and tingly. i was treated with traction and in time it resolved. then in 1990 i had a very bad fall hitting my r. knee and arm jerking my neck and stoved things. in a week i was dragging my r. leg when fatigued. first tried chiro.'s then tried to get them to check out circulation because of issues on and on. then a neuro. said i had ms i have 1 lesion in the cervical and to this day the same. when i asked them what caused ms they said it could not be caused by trauma. all the things i pursued for yrs. is coming together now more and more. ccsvi is on the scene it is opening up more and more questions and answers. i did not have a computer back then it was harder to find out stuff you were so limited in ways. a chiro. was a chiro. you tried to find a good one. same basically with dr.'s. but you guys coming on are so fortuante as far as info. goes. i found out about ccsvi on the computer. i'm finding out that there are chiro.'s that specialize. i'm finding more and more got ms after a trauma . all this for me anyway makes sence. i tried ccsvi so far nothing to write home about but there was enough effect good and bad that this has to have merit. i tried getting the atlas chiro. "nucca" got rid of back pain and tmj. but still progressing. i believe we are all different and and like 1 eye said age yrs. having it type all comes into play. when your neuro. laughed at you that was kind. i experienced beyond rude. google "uprightdoctor.com" someone else had posted about. we all have symptoms they call it ms. they have not come up with any valid answers or cure. so, all's we can do is keep looking. and who's to say what may help you. hopefull all these great dr.'s that are looking and treating ccsvi will be keeping an open mind too. bless the internet.
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ccsvi, stretching and ms

Postby patticake66 » Wed Sep 15, 2010 1:09 pm

Hi,
I was diagnosed with CIS, March 2009. My symptoms of being numb from the waiste down started about one month after I started an intense, and I mean intense stretching routine. I would stretch my neck to the point to where it was almost around my body, along with stretching my back, chest, arms, legs etc. I did this for 2 months and one month later experienced all that leg numbness, with lesions to go with it. Don't know what to think. 2 years prior to this, I had the rabies vaccine and I feel that is what triggered my ms. Could it have been the toxins that was injected into me, could it have been the stomach virus that knocked me out for 2 days, one month before my ms symptoms appeard that triggerd my ms or could it be that I have had ms since I was in my 20's when I woke up one day and had a droopy eyelid....eyesight not affected. Neuro-opthamologist along with MRI couldn't explain that one. Or that since my thirties, my left leg, which is now getting weaker, would buckle under for no reason. I am 44 years old now and still in shock that I could possibly have MS. The sad part of all this is not only did I have the rabies vaccine but I was forced to give it to my 2 and 4 year old and that guilt of possibly "injecting" ms into them is killing me. How I wish and pray everyday that MS is caused by CCSVI. It is hard to live not only with this disease but with the guilt of possibly giving it to my children.
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Postby 1eye » Wed Sep 15, 2010 9:32 pm

I put it down to green Kryptonite. Like MS neck-stretcher and the shoe-person, I thought I could do stuff that I couldn't, and am still paying the price all these years later. The X-rays show it was not all my fault. Sometimes life has confusing coincidences.
"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 elyse_peace » Wed Sep 15, 2010 10:14 pm

i do recall AndrewKFletcher speaking to posture and onset on his inclined bed therapy thread.
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Postby Mirry » Thu Sep 16, 2010 6:56 am

I have had migraines since I was a child. I just kept being prescribed pills and told it ran in my family so get used to it.

Now, thinking about how my MS may of started, I began quizzing my parents about my illnesses as a child. This will make you laugh but at the time it really did hurt. When I was about 8 years old, we had a circus come to town and in the middle of the village was the green and the duck pond. Well, we all went down to visit the elephants on the green and the baby elephant came up to the fence to see me and proceeded to wack me in the head :lol: My neck hurt for ages after.

Also, when I was around 13 yrs old I had scarlet fever which my Dr thinks was the trigger to my poor immune system I have now.

I'ts a very interesting topic to raise and I figured if it gives everyone a laugh I don't mind sharing something embarrassing that happened to me, you never know we may find a common denominator.
Mirry
"Just another bump in the road"
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Postby Mirry » Thu Sep 16, 2010 6:59 am

Patticake66, I just read your posting. I also have had the rabies vaccine. In 2008, I had three shots, 21 days apart, it's a requirement for my job.
Mirry
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Postby dlb » Thu Sep 16, 2010 7:51 am

@swynjones,
I can relate to your shoe story. We made a household move in the fall of 1992 and I decided I was going to pursue golfing in the spring of 1993. I purchased a pair of golf shoes with the metal spikes that were used at that time. For some reason, I started getting this weird feeling in my R big toe - kinda just an achy feeling. I blamed my golf shoes & even removed the spike on the front of my R shoe. The shoes were very comfortable, no pinching & I did lots of golfing & it all stopped bothering me. I started up with classic MS symptoms in the spring of 2005, was dx'd after my second set of symptoms in July 2005. The really weird thing is that after my last episode in 2006, I had some residual sensations in my R big toe. This eventually subsided, but that toe bothers me always when I am stressed or very tired. That toe feels the exact same way that it did in 1993 with the golf shoes. Now looking back, I suspect it was the beginning of MS for me. I think maybe the lesion/s that are causing that sensation may be my oldest or first lesions??? Is it all a coincidence or was there a pressure thing?? Who knows.... but I find it so interesting that we seem to share some unusual things now that we are on a forum and comparing oddities!
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shoes, ccsvi and ms

Postby patticake66 » Thu Sep 16, 2010 2:38 pm

Hi mirri,
I just read that you also had the rabies shot....just out of curiosity, how long after the vaccination did you experience ms symptoms?
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Postby Mirry » Thu Sep 16, 2010 4:54 pm

thats the thing patticake, I didnt have any change at all. I only found a few months ago that I definitely had MS because they were trying to sort out my migraines.
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