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Old 06-07-2013, 03:51 PM #31
sallymanda sallymanda is offline
Junior Member
 
Join Date: May 2013
Posts: 16
10 yr Member
sallymanda sallymanda is offline
Junior Member
 
Join Date: May 2013
Posts: 16
10 yr Member
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Hello friends,

Well we just got back from the neurologist's office a little while ago. The doctor said that despite the clean MRI, it's the combination of the abnormal VEP, one oligoclonal band found in the spinal fluid and my son's sudden inability to walk that makes him willing to bet that this is some form of multiple sclerosis.

He is starting my son on a five-day IV steroid treatment next week, hopefully this will reduce some of the symptoms and get him walking again, although it's obviously not a cure, it's possible this will help him regain some strength and mobility for some time. He presecribed flexeril for the muscle spasms and said it should help him sleep at night (some nights he's up until 2 or 3 in the morning crying from the back spasms while I sit there watching helplessly) so we'll see how that goes.

He also recommended physical therapy at home for the time being. The PT was here yesterday to evaluate my son and was hesitant to push him to walk or do any exercizes with him, he didn't want to risk making him any worse than he already is and wanted me to get the neurologist's opinion first, so he'll start the PT with him on Monday.

There's not much more I can say at this point in time, other than the fact that at least we're getting closer to a firm diagnosis. I have to admit that after spending a week in the hospital with my son and seeing some of the kids there, weak with cancer and feeding tubes up their little noses, I prefer a diagnosis of MS, while I know it can be debilitating and life-altering, at least it's not fatal and I'm sure some of those parents of children with cancer would trade places with me in a heartbeat, so that kind of helped put things into perspective for me. I'm getting used to the idea that my son probably has multiple sclerosis and I will deal with it instead of falling apart, which is what was happening to me before I brought him to the hospital and his diagnosis was still up in the air.

I'll let all of you know how the steroid treatment goes, this is all new to me, so I have no basis for comparison. I'm going to do some research and I hope that it does what it's supposed to do and reduces the symptoms of this flare-up of leg weakness and back spasms.

Sally
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Lara (06-09-2013), Magirose (06-08-2013)
 

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dysautonomia, hirschsprungs, neurological symptoms


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