@Daisychic 

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Daisychic

Nervous with a touch of vulnerability.

I shouldn’t be nervous but I am. I have a neuro appointment in two hours. I was CIS for years. My last MRI before this new one was five years ago (this showed numerous lesions) I had had mild symptoms for nearly 9 years off and on. But starting late this summer I started getting worse. Dizziness, left side weakness, eye pain, double vision etc… so decided I should call and make an appointment. My neurologist before had wanted me to follow up two years after my last mri, but life got in the way ( or I let it). Anyway, to get to the point, I had new mri two weeks ago. My original appointment was for end of December with neuro, however they called me a few days after my mri and said they are bumping up my appointment ( this is at an MS neurology center) and want to see me much sooner. So today I go in. The nurse sounded so serious on the phone, she didn’t even giggle when I was trying to be a bit funny in my response. I had already read online my new mri notes, so wasn’t surprised. They listed numerous new lesions and changes in brain. So I flat out asked her what this means, and she said since I already suspect, “this means he will be bumping you up to MS from CIS”. So while this is not surprising, and somewhat of a relief to know, I can’t help my myself from feeling anxious. I’ve been researching and reading all I can to educate myself on medicine used in ms, but that isn’t what makes me nervous. It’s that I’ve always been the silent patient who doesn’t complain to my loved ones about anything I’m feeling. I also do not like feeling vulnerable. I know I should shed the tough girl exterior, but it’s my defense mechanism. I have a husband who is supportive, he wants to be a part of things. So I know I am fortunate, but I still dread the attention. I have two daughters, 20 & 17. They’ve heard me talk ms things before, but not seriously. My 20 year old has extreme health anxiety of her own, so I wish I didn’t have to tell them. I refuse to tell my mother, she is not in my life, and my father I’ll eventually tell. But since I don’t work, that just leaves my husbands side of family ( groan). So my rambling is just nerves. Please forgive my weakness. I didn’t expect to feel this nervous. I’m not afraid of physical ms. Just the emotional side.
@theatricalbent

I was only diagnosed 18 months ago and the emotional side has been one of the toughest things. I felt broken and numb for a while but I'm getting better. Like you, I don't have a great relationship with my mother and there's been parental support for me. I always maintain an 'everything's fine' exterior where I laugh through it all. Things have got better for me with time and with having positive plans such as starting treatment. I've ended up being really open about it all, which for me, helped a lot. You must be in shock and it'll take time to work through that. Chris

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@Danielle924

Hi @Daisychic, I was diagnosed 21 years ago and through a variety of disease modifying therapy's I am still walking. I suffered from deep depression for about a year due to lack of support. It's hard to be diagnosed . I too have a tough exterior and pretended everything was fine on the outside and realized that that approach wasn't working so opened up to friends and family and started to get better support. Even got a psychiatrist through the ms clinic which really helped me. I also have memory problems and brain fog. Along with anxiety issues now. But manage to get through each day. There are alot of treatment options out there. I am currently on "Retuximab infusion " going on 3rd infusion in 2 weeks. I am doing really well for now. Good luck to you.