@staceyisabel88

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staceyisabel88

Bore off Optic Neuritis...

Hi all... I'm new here. I am so happy to have stumbled across this site. It's 2am and I'm wrestling a teething baby currently.. so it couldn't have come at a better time! I was dx'd just before Xmas when my son was about 5 months old.. This is off the back of suffering from optic neuritis since mid October. I don't know what MS I have yet. It's still very early days and I'm not on any treatment yet. I have several scans ect booked in the not too distant future.. so I guess I'll know more soon. I don't *think* I have any other symptoms other than the ON. I am severely sleep deprived from aforementioned darling child so can't be sure what is down to that and what could be MS! The ON is so frustrating. It's in my right eye and the vision in my left is very poor (I have a lazy eye and duane syndrome in it - lucky me hey!) I can't focus properly and the contrast is off on everything. It gets much worse when I'm hot (I seem to get hot all the time? MS related? Or because.of the baby blubber I'm still carrying? Ha) Consultant has said not to lose hope of it getting better.. but agrees that it's been a long time with no improvement.. so could be permanently damage to the nerve. Argh! Any other ON sufferers? Would be interested go hear your experiences. Also any other advice for an MS newbie is much appreciated! Stacey :)

potter

@potter

I am sorry you have to deal with this while you are taking care of your new baby. I don't know very much about ON, when I got through with my MRI the neuro told me I had a lesion almost touching my optic nerve. I did have a hole in the vision in one eye but that healed when I started a DMT. I also try to eat foods that fight inflammation such as fresh pineapple. I am hot most of the time, I have heard that can be a common problem with MS patients. I keep my furnace set at 65 F during the winter. Hope you get through your tests soon and find out what it going on. Potter

Stumbler

@Stumbler

Hi, @staceyisabel88 and welcome. It can't be easy for you with a young child, and this may be contributing to your MS problems. Stress and tiredness won't help your MS, so you need to try and find a balance between being there for your son and looking after yourself. Perhaps try and get a nap when your son does? Has your Neuro mentioned the possibility of High Dosage Steroids to address the Optic Neuritis problem? It's a potential treatment to a relapse, which is causing problems. It's not a cure, but it treats the underlying neural inflammation and helps you get a recovery underway. May be worth mentioning it...... As to your heat issues, yes, we can have issues with our "thermostat". Heat sensitivity can be a problem - https://www.mstrust.org.uk/a-z/heat-sensitivity For the present, try and take things easy (I know, young child!) and learn what you can about MS - you've started that, hence you're here. MS is now a manageable condition, so it's all about learning how to best manage it. :wink:

cherish

@cherish

@staceyisabel88 Good morning to you. Aw bless, its great having a lovely baby. Just wanted to stick my tuppenceworth in. And sorry if I've already wrote this in another thread. My daughter was almost 3 and my son was 8 months old when I woke up blind in my left eye. I went to eye clinic and they explained the ot but never mentioned ms so I just thought it was a hereditary eye prob as my family all have glaucoma (mums side). So I'm fast forwarding....... My daughter now 23 and my son 21 and I'm still mobile, pushing, trying. But I won, I managed to see my kids into adulthood, and you will too. You are doing great and never forget that. Lisa xxxx

Monica2015

@Monica2015

Hi @stacyisabel88, I too was formally diagnosed when my baby was a few months old. He is now 11 and still a terror! I've experienced 16 bouts of ON in all its wonderful guises, plus one extreme double vision episode and blindness in one eye for 6 months, so I totally can relate to your present predicament. Like @stumbler mentions, you should be offered steroids for this. I was and declined on each occasion. In retrospect, I consider that a very foolhardy decision given the possible consequences. I would speak to your MS nurse as to why you have not been even offered this option. My main point in writing was to say, do not give up hope!! You are young, and you can and will recover as I did on each occasion. Ps @cherish what a lovely sweet message!

cherish

@cherish

@Monica2015 With children we fight, and fight hard. So thank you. My main man is music, if I can still shift my hips I'm doing well. Love Lisa xxx

Monica2015

@Monica2015

@staceyisabel88, correct spelling, apologies. Can't say I hadn't noticed madam @cherish from your numerous messages to your partner in crime @george1234!? Agreed, we fought like dragons as we have our offspring to protect!

cherish

@cherish

Me and DoD..... Never! Haha. To take the pi** out of ms is the best remedy ever! Imagine me and Dodums living in the same crib? Lol. It would be ms v world war 3 and I'd still win! Us ladies (not forgetting men ofcourse) do our kids proud, good, bad and ugly! We find a way through, with power!! Sod ms! Bring it! Lol. Love to you @Monica2015 xxxx

highspirits

@highspirits

Hi Stacey, I was diagnosed shortly after an episode of optic neuritis not that long ago. Everyone is different but as others have mentioned steroids can help with recovery. I'm not sure if you've read about the optic neuritis treatment trial but is very useful. The link below is about this. http://archopht.jamanetwork.com/article.aspx?articleid=420680 Depending on how things progress, please discuss with your neurologist about starting ms treatment early, some are reluctant to do this but this is the modern thinking. Optic neuritis is a struggle and no one else can understand but get as much supportand help as you can.

JennProjectPositive

@JennProjectPositive

I had optic neuritis for about a month. I had infusions of solu-medrol about two every week and was prescribed medication for inflammation. I got my vision back in my right eye but it took time. I remember being able to see shapes again. I remember waking up and realizing I couldn't see anything out of my right eye other than colorful blobs. An MRI showed that I had inflammation and that's when the infusions began.

kateward35

@kateward35

Hi Stacey ?! I'm a 35 year old new mummy too..I have an 8 month old cheeky little now my Gracie Mae ..who like yours is full of energy ! I diagnosed 2 years ago after a bout of ON shingles and paralysis in my right side ...I have relapsing remitting ms ..when I'm not having a bloody relapse I'm fine ?... I was gone through the pregnancy now have had another bout of bloody ON in my right eye like you it's so frustrating !!! I'm not on any treatments but I'm seeing a Naturpathy last and taking herbal and natural remedies and I feel great ...def something worth looking into if u don't want to start taking steroids !! X

staceyisabel88

@staceyisabel88

Thanks you so much everyone for your replies. It feels slightly cruel to be given a beautiful bundle.. shortly followed by an MS diagnosis doesn't it... but I'm not sure I'd be coping as well if I didn't have him to take my mind of things. I sometimes feel sad that he'll never know his Mum as she was before. @cherish - thank you for your message - that's so reassuring for me. It's really interesting to hear everybody's ON experiences.. @monica2015 - 16 times! Wow! I was actually offered steroids at my last nuero app... However on balance due to me still nursing and the length of time the ON has been going on for.. I declined. The consultant was in agreement this was probably the best decision. Do you think this is something I should re-visit?!?! @highspirits - thanks for the link.. I will take a look. I am keen to get started on meds asap. Of course I know they will come with their own challenges.. but I had a long discussion with my consultant about it & I have decided I would rather take the plunge in the hope they will do what they are supposed to & keep me well for as long as possible! Thanks for the info RE heat sensitivity @stumbler & @potter. I wasn't totally sure if this was MS related but I was always a very cold person until recently so it must be. It's actually a bit of a problem as I just feel like I'm overheating all the time! I shan't complain though.. It could be worse. Hi @kateward35 I'm sorry about your ON.. but I mist admit it's nice to hear I'm not alone in my plight of looking after a baby whilst I can hardly see! Would be interested to hear about your natural remedies? Thanks again for taking the time to write back all! Looking forward to getting to know you all. Stacey x