Hi - I have posted on this thread previously (and on the I Can Relate Teens with MS' thread) .... Just wanted to update everyone. I am the mom of the 11 year old girl who was diagnosed in Nov 2013 with CIS at high risk of developing MS.( I actually have twins - but only one has this condition). First I want to thank everyone on here - reading your posts about yourselves and comments to others has helped me tremendously. Although I haven't posted a lot recently- I read the posts on this site - about 3 times each week and it has been so helpful for me.
So far my daughter is doing well. She has been on avonex since Dec 2013 and has not had any major side effects from the medicines ... Sometimes she has a little headache and body aches but they are manageable.
She will have her next MRI in June .... So we will see how things are going then. I don't know what the MRI will show but she physically seems fine ... No new symptoms nor does anything seem to be worsening. And she is not having any issues at school. Her main problem was double vision - that's what started us on her possible journey of having MS. Back in April 2013 she was seeing double -it was real bad.
At the time - the dr said that a vision test that he did on her - that the number should be at 'zero' but was at 19. Last week when we saw the dr., this number was between '1' and '2' .... So it's much better but it has been between '1' and '2' for about 5 months now ....so it hasn't worsened. She has been wearing a peal off/on prism on her right eyeglass lens and with that on ... She has no double vision. But anyway I pray that her MRI shows things are going well.
I try not to be paranoid or show her I am scared ... For her future. But it's hard. But I try to be honest with her and tell her that MS can be a tough medical condition to live with. When she complains to me about a headache or something - I sometimes get scared thinking its MS related (or related to the the avonex).... then I have to realize it could be anything that's causing the headaches like her period. My baby ... at 11 - has already started having her period and so maybe that's why she has the headache. She usually takes her avonex injections on Friday nights and guess what - this past Friday .. Her period also came - so she was dealing with her period and the avonex injection.
Anyway - I will make the next couple of months special for her and her twin - they are graduating from 6th grade in June and their birthday is in July so taking one day at a time (or trying). And I have to say that I am so proud of my daughter - she does so well academically despite avonex injections, doctor visits, etc. Anyway sorry for the long post ... And thanks for reading - and giving me needed support. I will let you all know the results of her MRI after she has it at the end of June.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
So far my daughter is doing well. She has been on avonex since Dec 2013 and has not had any major side effects from the medicines ... Sometimes she has a little headache and body aches but they are manageable.
She will have her next MRI in June .... So we will see how things are going then. I don't know what the MRI will show but she physically seems fine ... No new symptoms nor does anything seem to be worsening. And she is not having any issues at school. Her main problem was double vision - that's what started us on her possible journey of having MS. Back in April 2013 she was seeing double -it was real bad.
At the time - the dr said that a vision test that he did on her - that the number should be at 'zero' but was at 19. Last week when we saw the dr., this number was between '1' and '2' .... So it's much better but it has been between '1' and '2' for about 5 months now ....so it hasn't worsened. She has been wearing a peal off/on prism on her right eyeglass lens and with that on ... She has no double vision. But anyway I pray that her MRI shows things are going well.
I try not to be paranoid or show her I am scared ... For her future. But it's hard. But I try to be honest with her and tell her that MS can be a tough medical condition to live with. When she complains to me about a headache or something - I sometimes get scared thinking its MS related (or related to the the avonex).... then I have to realize it could be anything that's causing the headaches like her period. My baby ... at 11 - has already started having her period and so maybe that's why she has the headache. She usually takes her avonex injections on Friday nights and guess what - this past Friday .. Her period also came - so she was dealing with her period and the avonex injection.
Anyway - I will make the next couple of months special for her and her twin - they are graduating from 6th grade in June and their birthday is in July so taking one day at a time (or trying). And I have to say that I am so proud of my daughter - she does so well academically despite avonex injections, doctor visits, etc. Anyway sorry for the long post ... And thanks for reading - and giving me needed support. I will let you all know the results of her MRI after she has it at the end of June.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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