December 13th, 2009


I have been talking about this for years now

BBC News - 'My son had multiple sclerosis aged five'

My first symptoms, in retrospect and in dialogue with my MS Specialist Neurologists, were at age 9 with some that may even have been earlier - vertigo, fatigue, pain (headaches and back pain - don't even start me on the doctors that *still* try to tell me that "you don't get pain with MS"!), loss of concentration, forgetfulness.

I was not diagnosed until I was 30 and able to persuade the doctors that these symptoms I had been getting on and off for much of my life were real and not just "growing pains" or "all in [my] mind". I know that in those days they did not believe that these diseases could appear in children and so I do not blame my parents or the doctors. Not any more. I used to get very depressed about it all and angry at the medical profession in general for not believing me and other patients.

I have a vague theory, with no scientific evidence to back it up but that might make some sense based on my BSc Biochemistry and the reading I have done subsequently, that many of us with MS were born with it, that is it a genetic susceptibility which does not always express until later in life (and that might mean at age 30, 9, 5 or 2 weeks). Time will tell, I guess.

I am glad that this little boy will now get the care and medications that he needs and hope that his MS will not therefore progress.

P.S. Another thing that the doctors always used to say was that children do not get MS. I have been saying and still say that what they mean is that children do not get diagnosed with MS because the doctors cannot understand from the children what is wrong and/or the children cannot express themselves. A slightly off-the-wall though had just occurred to me. Vets have to train for longer than doctors because the animals cannot express their symptoms to the vet. Maybe paediatricans could learn from the vets.
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