I am the mum of a 8 year old girl who 3 weeks ago devolped some alarming symptoms,as the weeks have gone on i am constantly getting drawn back to the fact she may be suffering the beggings of MS. On the 10/6 she had a hot bath followed by sudden blurry vision…by the following day this was no better and she had a headache around that eye,we went to the optision and he could find nothing visually wrong but was concerned so did a urgent referral to the local hospitals eye dept…this was for 9 days later but by the 7th day the vision went from blurry to black and she couldn’t see from that eye so I took her to a&e and from there things moved quickly through the eye dept where the visual field test showed defects and a MRI was booked…2 days later she had the MRI and the following day that came back as clear,still no vision from that eye at this point and symptoms were pain in the eye,light sensitivity,headaches, nausea. In the last 7 days she has developed pins and needles /numbness in her hands on and off,bladder leaking problems and still nausea mainly in the morning for 1-2 hrs,we seen a peads doctor who has done a huge range of blood tests but we have none back as of yet and tonight she has had a episode of sudden pins and needles pain in her hands for 2hrs so bad she couldn’t use her hands at all and also pain in her legs stopping her from walking ,she’s saying the leg pain is not pins and needles it’s just pain and feels weird and it’s so painful to weight bare still now 5 hrs later but the hands have gone back to normal. The eye vision has had a slight improvement tonight in that it is now half black half blurry rather than all black but so far every doc we see just draws a blank on what this could be and has give no idea on what they will do if the bloods come back clear…I feel so help less and don’t know where to turn next to help her
It’s not right; it’s not fair. How can anybody give a reason why an 8-year-old can be inflicted like this? If there are powers that be I will state here and now; I’ve had a life; a bloody good one; transfer her troubles on me. Na; it just doesn’t happen like that.
I will remain anon, but I mean it!
It could be http://aps-support.org.uk/ it mimics MS symptoms but it may be worth giving her a test.
APS can affect all age groups, from infancy to old age, but the majority of patients are diagnosed when they are aged between 20 and 50 years old. It is more common among women – for every two men with APS, there are seven women affected.
sorry to read that your baby girl has been having problems.
the health service will have identified this in her records.
has she been given a follow up appointment with the paediatrician?
make sure that you record every step of it, maybe important.
she’s a lucky girl having a mum who is actively looking for answers.
try not to get too stressed because your child will pick up on this.
in your shoes i’d go back to my gp and say that you need answers.
Hi, You’re doing a great job. Carry on doing what you have done here. Keep a detailed diary of your daughter’s symptoms and all the letters and results of tests you are given. There’s nothing more anyone can ask of you. I hope you get answers soon. I know that there’s nothing worse for a parent than a child who’s not well. Until then please come back here. You’ll always get understanding and support from the Forum. Best wishes, Anthony
I will take at look at that link later on,thank you so much x
Yes we have a follow up appointment for when the blood results are in,but because the arm and leg symptoms have began since then I’m going to go to the go because she’s still struggling to walk today alough there’s an improvement since last nite.
Thank you ,yes I have everything written down as it happens and will take a trip back to the go tomor with these new symptoms,thank you x
When my daughter had her MRI it was only a brain one and not the spine also,do you think I should ask at the next appointment if she can have a spine one or would that not b nessesary? Also today she went back to school for the 1st time in 2 weeks and she had trouble holding and using the pencil because of the pins and needles and numbness in her hands and again tonight pins and needles in her foot (only 1) that she said caused pain up her shin bone when she walked on it and I noticed as she went to bed it was making her limp
I’ve replied to your message lovey… don’t stop pestering until you get an answer. We had to be persistent to get anywhere - I felt that no one wanted to help us. But eventually we got a diagnosis. It’s so hard for you. Has she seen an opthomologist ? I would say The clear MRI is a positive thing though. My daughter had a second one 3 months later which showed changes. Let us know how you go on.
Thanks for replying yeh this is how I feel like it’s a up hill battle to get someone to listen to what she’s suffering,she has been seen by the local hospitals eye dept a consultant from there and has a follow up there next Tues to,I’m not sure of there title. Did your daughter have the brain and spine MRI? We just had the brain one and yes very reassuring that there’s nothing on that,was your daughter’s clear on the 1st on and then showed changes 3m later? Or showed things from the start? Again tonight she has pins and needles in her feet and on the right side they have been there most of the day,when I collected her from school they said she had been allowed her shoe off most of the day because it’s worse for her if things r touching the area that has pins and needles xx