Last reply 4 months ago
Newly (almost) diagnosed

I am 42 and have been sick for twenty years. First it was depression then bipolar. After a seizure it was inoperable brain tumours then possibly MS, then possibly lupus and now they are pretty confident it is MS. I find out on Thursday, February 20. I also have ostenecrosis and have had both knees replaced in my thirties and now need both hips and a shoulder. I have no idea how to explain to my five year old about this. He was too small to remember the knee surgeries. He can’t understand why Mummy can’t play like other Mum or go tobagganing or skating or skiing or why I am housebound when there is ice. How do I tell my son I have MS?

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stumbler
4 months ago

Hi @sarah_sativa and welcome.

You have been through the medical mill. But, you’ve still succeeded in becoming a mother. A fine achievement.

As for telling a five year old, you might want to give it another year or so. In the UK, an MS charity, the MS Trust, issues this booklet :-

https://support.mstrust.org.uk/file/Kids-Guide-to-MS-2018-WEB.pdf

There might be something similar produced in the States.


vixen
4 months ago

Hi there, wow, you have had a lot on your plate. Do you get the results of a lumbar puncture on the 20th? If it is MS, and there is a treatment plan, depending on what that is, you can incorporate it into a chat with your son. Or, you might just want to hold back until he is older.
Take a deep breath. Focus on yourself, your son knows that you love him. Let us know how it goes on the 20th and stay strong…..


sarah_sativa
4 months ago

@stumbler and @vixen I had a puncture a few years ago but it was clean. I am waiting to see if there are lesions on my spine as they are in my head.. Fortunately the MS clinic at St. Mike’s here in Toronto is awesome. @stumbler thanks! I will look that over. It’s hard as I have so many physical limitations already he knows something isn’t right but he is too young now.

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