natalie8647 21/04/17
Last reply 10 months ago
Pending diagnosis and scared

Hi everyone I am new to this page. I had A MRI last week and came back showing 6 lesions in the brain. I have abnormal reflexes as well. My doctor is saying it’s pretty much MS due to the demyelination suspicions of the lesions however she needs to confirm with a specialist. Although this would validate how I have been feeling for the last 10 years (chronic pain and fatigue and now constant dizziness) I am scared to death. I have a 4 year old and am scared what this will mean in regards to how I will be feeling to be able to raise her happily and healthy. At this point I am looking for some encouragement from you MS warriors and to tell me it’s going to be OK? !

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californiadreamin
10 months ago

while no persons ms will be exactly the same there is much hope today. There are drugs that can help a lot and there are lifestyle changes that some believe (including me) help tremendously. Consider reading more on this site and learning what you can about ms. Our family follows a protocol called oms (overcomingms.org). Consider looking at that, it gave us a lot of hope.


honeysuckle
10 months ago

Aw my lovely I am so sorry to hear you are feeling scared and worried about how you will take care of your little one. Being in limbo whilst you wait for a diagnosis can be a really scary and difficult place to be. IT WILL ALL BE OK THOUGH HUN. As California said in their post before, there is so much hope today and there are many different approaches to MS so its very much about finding YOUR own path and ways to manage/cope…which in time, when you know what you are facing, you will. Every new day brings hope, new research, new personal experiences of what does and doesn’t work for you and new ways to love and take care of yourself. Your little one just needs a loving Mum, that’s their biggest need and you can give that to them regardless of your health. Some things may need to change, but you will find new ways to manage and to be a good Mum. You get somewhat of a limited supply of energy each day but its just about prioritising where you want to use that energy so if its for your child (which it sounds like it is as You sound a very caring Mum) then their needs will be met as you will find ways to meet their needs. Be kind to yourself hun. Utilise the support on here, social media and perhaps your local area. You don’t have to have all the answers now and you will find them intuitively if and when the time comes. Take care, were always here for you if you need us 🙂 xx


doubleo7hud
10 months ago

Dude it be reet your still gonna see your little one grow up, iv got three 1,2 and 6 just been diagnosed officially had to wait but kept busy and waddled through it.! just take it as steady as possible and fight the fucker don’t let it take over make it live with you not live with it. Your in the right place we’re all here to help.


vixen
10 months ago

Hi there, I am fairly new to this site too and find it so useful to dip in and out. Yes, it’s really scary but you need to focus on the fact that as MS diagnosis doesn’t mean the same as it did twenty years ago. I only got diagnosed 4 months ago but already I seem to have learned that I can still be ‘me’ but I sometimes need to find different ways of getting there! For example, I used to relegiously walk for an hour a day, which I now can’t. But, I can achieve the same by breaking the walk into smaller chunks, thus getting the same amount of exercise! The comments above are really true; this is all about finding your own pathway, which will take trial and error. This site and others will be invaluable. Good luck, enjoy being mummy. You and your daughter will be growing together x


natalie8647
10 months ago

Thank you all for your responses they mean a lot and are very helpful. One thing I have already noticed and I’m not even officially diagnosed yet ….I have felt so much love and heard from many people I haven’t even met, it is very heartwarming ❤


vanessaj
10 months ago

Hi Natalie. .I was diagnosed when my son was 6 and I felt exactly the same as u do. Now 13 years and another child later and I’m still here. I think the key is to learn your limits and then pace yourself. It takes time but you will get there. Don’t Google or take on board scary stories as that took up such a lot of worry for me in those early days. I would just look on credible sites like the MS society. I’ll send u a friend request as it’s nice to know u can ask seemingly silly questions x


natalie8647
10 months ago

Thank you Vanessa that would be great!


myrinda
10 months ago

Hi Natalie and everyone who is here for support 🙂 I have MS and I am also a mother. You are not alone and we are in this together… and I feel what you feel sometimes and it’s fine! Totally agree with all comments above – your daughter will be proud of you 🙂 Love, Julia


gracekasia
10 months ago

Hi Natalie, I got my final diagnosis in December. I’ll briefly run you though what happened to me. I had so many lesions the doctors couldn’t even tell me the number and was rushed into hospital for IV steroids in October. I’d had symptoms for a long time, loss of sensation, optic neuritis, loss of walking functions, headaches most of my life (maybe it’s related). However, now I feel great!

I was working full time on a feature film through this whole nightmare (which was totally insane of me to do, but I was in denial anything was wrong). When I got my diagnosis it was very scary, all the information, risks with the drugs on offer, change in lifestyle, support etc were overwhelming for me for a while. I decided to see how things went without pharmaceutical drugs as I don’t like the risks involved and know I am a hugely sensitive person. Instead I went head first into being as healthy as possible, eating healthy food, visiting a cranial osteopath, reflexologist, homeopath, nutritionist and most of all, surrounding myself in positive people, leaving any negativity and stress as far away as I could. I also realised I needed to slow down a great deal as I’d previously been working none stop, riding my horse, seeing friends and sleeping on average 2-3 hours a night.

It is scary! But it’s also quite exciting getting to know your body and how it behaves, I even have a copy of my MRI scans which is quite weird and fun to scroll through. At the moment I keep getting bad fatigue which makes me upset, but it’s a slow process getting back on track and if you have friends and family to help you that’s fantastic! My reflexologist says to me “don’t see it as the MS, see it as stress. you need to get away from that stress”. (My MS came along when I was going through some pretty nasty stress with my personal life). And baring this in mind I have changed a lot about my life for the better, things I should have done long ago! Don’t be worried, it’ll all work out fine xx


natalie8647
10 months ago

Thanks so much for your message. .it is encouraging to read that you are feeling well! Do you kind telling me what you cut out of your diet? Has it given you energy or less pain?


gracekasia
10 months ago

My symptoms seem to flare up more when I eat gluten, refined sugar and drink alcohol so they are the main things I avoid. I also avoid trans-fats (only use coconut & olive oil as my oils) and preservatives, eat as much organic as I can and drink filtered water only. Limiting the toxicity in my body. Initially I started following the Paleo diet just as a quick fix but I’ve refined it to suit me as I think that cutting out grains isn’t essential for me. Mainly just eating healthily!


natalie8647
10 months ago

Good tips to try..thank you! I have been told I am sensitive to refined sugar which I am trying to cut a lot out and the alcohol thing makes sense too..the thought of MS alone is overwhelming but to cut out alcohol and chocolate? I don’t know if I should laugh or cry. 😣 lol

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