HiHi y'all

Good afternoon. My name is Courtney. Just wanted to finally say Hi.
Little about me.
I was diagnosed with RRMS in January 2011 but my doctors at the time think I’ve had it since November 2005.
I started with severe, debilitating headaches that nothing would take care of them. That was in 2005. After 13 spinal taps, I was finally diagnosed with RRMS. Since then, my walking and talking would go for no reason. I would have trouble seeing at times, optic neuritis. I’ve had surgery on my eyes, left wrist since then.
Fast forward to today. The headaches are so severe that I’m on narcotics. I have 2 lesions in my brain that are 3mm in diameter, 2 lesions on my back that are 3mm in diameter, and a new lesion on my brain that is 5mm in diameter. That I know of right now.
I do what I can, when I can, but I want to do more. I have little help from my bf at times. He still doesn’t fully understand what this disease is doing to me. I’ve tried getting him involved with going to the doctors with me and actually listening to what they say, but it’s like talking to a brick wall at times.
I can’t work a real part-time job. I have trouble doing alot during the day. I’m so mentally, physically, emotionally drained that I just want to give up half of the time.
I have a service dog that my bf messed her up. I have to retrain her.
The pain is so severe in my head. It feels like someone is taking a hot poker and stabbing my head while turning it around, moving it all over my head, but times that pain by 100,000,000.
I’m just lost with no one to talk to about the pain and other problems that go along with MS.
If this was very long, I apologize. There still so much more I could say.
Thankyou for taking the time to read this.

1 Like

keep hanging in there. it’s hard. I hope your doctors are smart, sensitive, helpful, understanding and productive
it sure is hard. take care

It is very hard to explain MS to someone who isn’t sure they need to understand. Most of the symptoms are not real visible so people can ignore them.

Have you joined an MS support group or your local MS chapter? Support from someone who knows what you are going thru helps.

When you tell people you are tired or have no energy they often think that you are just overtired. They don’t understand that MS means conserving your energy for the things you MUST do and not the things you might really WANT to to do.

You can talk to me when you need support. They think my MS symptoms started when I was 22. I was diagnosed when I was 55 and I am will be 70 next month. Hang in there. 🙏🙏🙏 Blessings for healing and hope.

My bf has heard what my doc had to say, that my being tired, is different then his being tired, but he doesn’t care. He heard them, but doesn’t care. I have to be very careful with what I need and want to do, but if I don’t do anything that he wants me to do, he gets pissed.

Then the best I can suggest is kick him to the curb. He doesn’t deserve you and he doesn’t love you if he isn’t listening and helping. I know it isn’t fun to be alone, but it is better than being with an abusive jerk.

You need to focus on you. You are worth it. I will pray for you to get better and be comforted on your journey. 🙏

My bf/husband and I had a great, long talk and are now working on us. In the past 5 days, we have not had a fight at all. I think we are moving in the right direction and I hope we continue.

I feel very bad for you my husband doesn’t understand too much. He just says oh sure it is the MS. I think he may be getting better. Not sure

I was wrong on my last post from 141 days ago. We are moving further apart. I thought we would get better, but his drinking is more important.

Hi Courtney, I feel your pain, both physical and emotional. I feel that I have had a smooth time of things when I hear what other people like you have and are going through. I was ‘tentatively’ Dx’ed in 2008, although several other things might have clouded the diagnosis at that time. There are struggles but the sun does rise every morning, birds sing and I try to look at each step as a new journey. Keep strong, especially in these times and I hope that you have ‘retrained your bf!