Hi all - back on 1/20/14, I posted an intro of myself - I am the mom of the twin girls age 11 where one is diagnosed as having CIS with high risk of developing MS. I want to give you an update. First, thank you all for your encouraging words - I was truly scared to death for my daughter but after coming to this Board .. I started feeling better and not so alone.
Today, my daughter had a follow-up appnt with her pediatric neurologist who specializes in MS. It was a good visit.
The Dr. repeated that she is at high risk so they want to continue to treat her with Avonex and taking Vitamin D. The Dr. explained again that back in April (when my daughter was hospitalized for a week due to having double vision) - that the MRI had showed 1 lesion on the cerebellum ....but since then, she has had no other symptoms or flare ups except that in Nov, another MRI showed a 2nd lesion ....so she said this is an indicator of CIS with high risk of getting MS.
The Dr. did her physical check of daughter and talked to her about school, activities, taking the avonex, etc. and said she sees no changes in her other than her vision and that's simply because she needs a new eye prescription and glasses (not related to CIS or MS). So that's good.
This Friday will make 2 months of her taking avonex and she has not had too bad side effects - a bad headache a couple of times ... that didn't last long and sometimes muscle aches that also don't last too long. They then took blood tests today - and want her to take her next MRI in June.
Back in Nov- the doctor also asked me to have my daughter get a neuropsychological testing -and we have done this and just waiting for the written report. The dr. wants this report to have a baseline of her cognitive level/skills and to see if it shows she needs anything to help her at school. Note this testing is not cheap.
I also asked the dr. to check my other daughter (fraternal twin) and she did do a physical and sees no issues. And she also had her take blood tests today too. But she sees no reason for this daughter to have a MRI.
So a good visit - I pray that my daughter does not develop MS or if she does, I hope that because she is being treated early that it helps her in the long run. And honestly, before my daughter's problems and possible MS - I admit I didn't think much about MS and how it effects people ... but I see things in a whole different light now. My heart goes out to the struggles most of you have had dealing with this monster and I pray there is a cure one day soon. Thanks for being there for me.
** 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. **
Today, my daughter had a follow-up appnt with her pediatric neurologist who specializes in MS. It was a good visit.
The Dr. repeated that she is at high risk so they want to continue to treat her with Avonex and taking Vitamin D. The Dr. explained again that back in April (when my daughter was hospitalized for a week due to having double vision) - that the MRI had showed 1 lesion on the cerebellum ....but since then, she has had no other symptoms or flare ups except that in Nov, another MRI showed a 2nd lesion ....so she said this is an indicator of CIS with high risk of getting MS.
The Dr. did her physical check of daughter and talked to her about school, activities, taking the avonex, etc. and said she sees no changes in her other than her vision and that's simply because she needs a new eye prescription and glasses (not related to CIS or MS). So that's good.
This Friday will make 2 months of her taking avonex and she has not had too bad side effects - a bad headache a couple of times ... that didn't last long and sometimes muscle aches that also don't last too long. They then took blood tests today - and want her to take her next MRI in June.
Back in Nov- the doctor also asked me to have my daughter get a neuropsychological testing -and we have done this and just waiting for the written report. The dr. wants this report to have a baseline of her cognitive level/skills and to see if it shows she needs anything to help her at school. Note this testing is not cheap.
I also asked the dr. to check my other daughter (fraternal twin) and she did do a physical and sees no issues. And she also had her take blood tests today too. But she sees no reason for this daughter to have a MRI.
So a good visit - I pray that my daughter does not develop MS or if she does, I hope that because she is being treated early that it helps her in the long run. And honestly, before my daughter's problems and possible MS - I admit I didn't think much about MS and how it effects people ... but I see things in a whole different light now. My heart goes out to the struggles most of you have had dealing with this monster and I pray there is a cure one day soon. Thanks for being there for me.
** 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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