Hi I want to try and keep this brief… Though everything that is going round in my head might prove different. I have not been diagnosed with ms. I first seen my neurologist in 2008 I started with a pain and numbness in my back which then travelled down my right leg and foot anything hot that touched me felt cold and vise versa. This lasted approx 5weeks. I was sent for two MRI scans one on my back and neck and followed with one on my brain. Both scans showed patches of inflammation. After 4 years of no symptoms my neurologist was happy I did not have a progressive form of ms but did not want to sign me off as he said “I have all the signs and none of the symptoms” Since I have had numbness in three fingers on my right hand and a tingling sensation straight down my back my arms and legs every time I lower my head. My neurologist wants me to go for re imaging on my back and neck. I would like to ask u all for some advice i accepted long ago that i may have ms that i am strong enough to deal with and have the upper most respect for those who do. I need to know if this sounds like a relapse. Last year I had a little boy he was born with cerebral palsy he has epilepsy and he is blind My little baby is the most important thing in my life he really needs me and needs my to be strong for him. Please don’t think as I have a lot going on at home you couldn’t be honest with me like I said before I accepted along time ago I may have ms I would just like to know if any of this sounds similar? I would really love to know what you all think. Should I brace myself? I’d like to start doing things that could help me if so. Can you help me? Thank you xx
Hi there you situation sounds similar to me. In 2008 I had left sided back and leg numbness. Hot felt cold & vice verser. Also had l’hermittes - tingles after bending neck forward. It also lasted about 5 weeks. At the time I didnt have MRI as my GP thought it was either stress or virus. As I recovered after a few weeks we just left it. Then about a year later my right leg started to feel weak after a very long walk. Anyway I finally saw a neuro in 2011 and had an MRI of brain and spine. Brain was clear but spine showed one lesion. As I had had radiation therapy for cancer in 1990 the neuro thought this lesion was a delayed reaction to that. He believed this to be the case as I had a period of l’hermittes a few weeks after the radiation treatment in 1990,(which is quite common after radiation). Anyway when I saw a different neuro he seemed to disagree and thought that I had some sort of benign ms and the first attack was in 1990 and the second in 2008. I had a lumbar puncture which was clear. So I am still in limbo and waiting. Am due to have another MRI soon.
I know also how you must feel about your little boy. I have a son who has both downs and autism. He also lost an eye when he was a toddler due to a rare cancer called retinblastoma. He is 20 now and I am his full time carer.
I really hope that you get some answers soon.
Thank you for your reply Moyna x I’m so sorry you’ve had such a bad time it’s the not knowing Your right are experience is very similar to mine I hope we both get to find out the cause soon Your the type of mum that is a inspiration to me my little boy is only one years old and having a child with complex needs isn’t easy. All my love and thoughts to you and your family I hope all is well for you. Andrea xx
Hello and welcome I’m not a neuro, but yes, it sounds like MS to me. However, getting a label for what is going on is not going to change it so life will not suddenly get worse. In fact, it should help as you might find there is greater support available with a diagnosis. It’s not uncommon for people to have more than one condition, but cerebral palsy, epilepsy and blindness must be pretty unusual Hopefully the epilepsy can be controlled with meds? I know two Paralympians through a sports scholarship scheme at Uni. One has cerebral palsy, is doing a Masters degree in Maths and has won several gold medals in Dressage. One was on the GB team for shooting; he was blind (they use sound to target). Life is probably going to be more of a challenge for your son as he has both disabilities and the epilepsy, but with a loving, supportive mum, who knows what he might achieve? And whether or not his mum has MS truly won’t matter - children are amazingly resilient to it! Karen x
Thanks Karen that’s kind of how I’ve been thinking. I know it may be a long road to getting a diagnosis but it really dose help to here other people’s opinion. Yeah my little boys epilepsy is well controlled with meds he still has spasms but the fits have been under control for a few months now but yeah it is a little unusual he was starved of oxygen during birth he was born with brain damage the back of his head was worst affected unfortunately this is where the vision comes from. Cerabal palsy and epilepsy can be common together in some patients. It can be a little hard somedays but that’s my little boy he’s perfect his little smile when he hears me in the morning what more could a mammy wish for Andrea xx
I’ve been reading up a little bit on l’hermittes that Moyna mentioned in my first reply this does sound a lot like the problem I’m having when a bow my head. Is it at all possible that stress can bring on symptoms?
wow you are such a brave, strong lady
but you need some help for the days when ms is being mean to you. do you have family/friends who could help?
also does your local area offer a Portage scheme for babies with disabilities?
i sat in on a session that my friend who is a portage worker did with a blind baby and his mum
the mum was delighted that she could do things with her baby
wishing you the very best for you and your baby
Aw thank you Carole x We have a disabled school just round the corner from where we live he goes to a baby group there at the moment where you can try all the sensory toys before you go out and buy them it’s really good they have a pool there too Yeah I got lots of family around my partner had been amazing a true rock for his family I don’t know how he’s still this strong with all going on with our son and now me too We have s support worker that comes twice a week for two hours its a massive help for getting shopping and cleaning done. Thank you so much for mailing me that really made me smile. You take care hun Andrea xx