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.
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.