Worse Than An IA

I'm so sorry, princesslemons.

Thanks everyone...

I'm really just shocked. The numbness had disappeared, so I thought it was just nothing and I'd be fine... I was completely blindsided today. He told me that my prognosis is very good, because the first symptoms have been sensory related. Apparently that's a really good sign for the progression of the disease in nearly all cases... so that's good. But I don't even know anything about it. I was too shocked to ask anything, and he figured a bunch of info at once wouldn't do me any good... He's setting me up for a talk with a specialist nurse...

Right now my mind is just buzzing. But the thing that's the hardest is: How do I tell my mother? 

Remember my numbness? I got the results of my MRI today. The diagnosis is MS.

Still processing it. I found out about 2 hours ago.

I am so sorry to hear.

So sorry to hear about this, P. My BIL was diagnosed this time last year. Once the initial shock wears off, it will be easier to process things. There is loads of info, support and ground-breaking research going on so do your best to keep positive!

I'm really just shocked. The numbness had disappeared, so I thought it was just nothing and I'd be fine... I was completely blindsided today. He told me that my prognosis is very good, because the first symptoms have been sensory related. Apparently that's a really good sign for the progression of the disease in nearly all cases... so that's good. But I don't even know anything about it. I was too shocked to ask anything, and he figured a bunch of info at once wouldn't do me any good... He's setting me up for a talk with a specialist nurse...

That's good news. Hopefully you'll get some good information when you get to talk with the specialist.

Right now my mind is just buzzing. But the thing that's the hardest is: How do I tell my mother?  

Would it be easier to wait until January when you're back for the wedding? I know sometimes big news like this can be better delivered in person.

You'll be in my thoughts.

Remember my numbness? I got the results of my MRI today. The diagnosis is MS.

Still processing it. I found out about 2 hours ago.

So sorry to hear to hear this my 3rd sister has MS she found out in her late 20's you have my sympathies!!     

So sorry to hear about this, P. My BIL was diagnosed this time last year. Once the initial shock wears off, it will be easier to process things. There is loads of info, support and ground-breaking research going on so do your best to keep positive!

There is a lot of ground breaking research.  Next week one of the top Harvard guys (Strominger) is doing a lecture at Imperial. 

As for telling your mum, there's probably no easy way.  TBH, my mom hung up on my sister when she told her, but I think it is partially because we always knew something was up with her, and we had a family friend who had MS in the late 1970s into the early 1990s. 

If you can find a support group or even just someone local they might be able to give advice on talking to your family.

Honestly, if your doctor says you have a good prognosis, you probably do.  My sister is involved in the MS community and she has a lot of friends with milder cases than what she has.

I am so sorry PrincessLemons. 

I'm sorry to hear this PrincessLemons. Take care of yourself.

Oh my god, PL!! I'm so so sorry about the diagnosis. What difficult news to hear. I can't imagine your shock. I'm glad you're here with your DH and best to just tell your mom as soon as possible, I think. You'll want and need her support too. Giant hugs, kiddo. Keep your chin up. xoxo

Remember my numbness? I got the results of my MRI today. The diagnosis is MS.

Still processing it. I found out about 2 hours ago.

Oh my gosh, I am so sorry to hear. You're in my thoughts!!!

I'm so sorry, princesslemons.  I hope that you're able to get all of the information you need once you have more time to process everything.  And the others are right, there is a lot of groundbreaking research taking place right now.  My husband is a scientist and the project he's working on right now has some really exciting implications for MS.  From what he can tell from the contact he has made with researchers in the US who focus solely on MS, they are on the verge of doing great things. 

PL, I'm so sorry you got bad news after all these investigations, god, what a shock! But your doctor sounds really positive about your outlook, and there's just so much research going on for MS these days. I actually had one of the new experimental chemo drugs during my bone marrow transplant that they're using to treat MS - Campath.

And from someone's who's been there, there's no easy way to tell your mother. I'd advise doing it asap - today if you can, because there's never going to be an easy or "right" time to do it, and I think it'd be even harder in person. Just ring up, and say it first thing. Though perhaps don't give a big pause after "ok I've got some news" like I did, because then my mom blurted out "ooh you're pregnant, aren't you!". Uhh no mom, that would be infinitely preferable...

And from someone's who's been there, there's no easy way to tell your mother. I'd advise doing it asap - today if you can, because there's never going to be an easy or "right" time to do it, and I think it'd be even harder in person. Just ring up, and say it first thing. Though perhaps don't give a big pause after "ok I've got some news" like I did, because then my mom blurted out "ooh you're pregnant, aren't you!". Uhh no mom, that would be infinitely preferable...

I agree that there is no right time to tell my parents... I've been anxious and depressed all day, feeling like I had a huge weight on my shoulders... So I went to the kitchen to check on the turkey, and then without even thinking about it ended up walking upstairs and calling home - my husband didn't even know I was doing it. It was completely spur of the moment... My mom wasn't there so I told my dad - the level headed one. He took it really well. He was very worried that it was something more serious (my grandfather died from a brain tumor, and his first symptoms were similar to mine) so he was actually very relieved. He was incredibly supportive and sweet. He said he has several friends with MS who manage it well, and like everyone else has said - that they are making great strides in the medical field in that area. He told me that he will tell my mother, and then she will call me once she is calm enough to talk... I think it's better that way.

I feel worlds better, having told my father. It just felt wrong to keep it from them...


Thank you everyone for your kind words.    Now that I'm feeling more positive (and honestly a little relieved to know what is causing all of these crazy problems with my body) I'm going to put it out of my mind for a bit and celebrate our belated Thanksgiving day.

PL- My mom was diagnosed with MS in 1993. She's now 63 and is doing extremely well.  She was diagnosed following her initial attack in which she was unable to have total control of her leg/ numbness.  It seems that the hardest part was getting the right medication and the emotional component (i.e. depression) that followed the diagnosis.

She had to make lifestyle changes like no longer having a high stress position, not being able to stang high heat, etc. She's done that and has been grateful for the lifestyle change.  There's definately a mourning period. Good luck