An update

[Ant1981]

Cure

I use copaxone and that’s my best option when I eliminate the ones that cause immune suppression, require hospital stays, or don’t have copay assistance. I’m saving more money now that I’m only doing the minimum on my student loans but I have other things I want to do while I can. And I don’t think they will ever cure this... there is way to much money in treatment

Even if they don’t find a cure, the treatments are getting better and better every decade with less side effects. Even 10 years ago there was no oral medications. So in another 10 years who knows?!

[Mamabug]

I use copaxone and that’s my best option when I eliminate the ones that cause immune suppression, require hospital stays, or don’t have copay assistance. I’m saving more money now that I’m only doing the minimum on my student loans but I have other things I want to do while I can. And I don’t think they will ever cure this... there is way to much money in treatment

I use Copaxone too.

And, unfortunately, I believe you are likely correct about the lack of likelihood of a potential cure for MS. The pharmaceutical companies are profiting too much from selling their medications. There would not be the same profits for a cure because they we wouldn't need to keep purchasing their medications. It's sad.

[Daisycat]

I am sure they will eventually find a cure for this, but it’s going to be a loooooooong time from now. I am sick of crying myself to sleep three nights a week (the nights I use my meds) and am so beyond thankful that my boss understands that this is a hard time of the year for me. If I did not have an understanding boss I do not know what I would do. She basically agreed for me to have this entire week off (since it’s the anniversary) on top of my already 18 day vacation in October.
I plan to stay on Copoxane and am really hoping my new neurologist will agree and not try to switch me to something else. I have looked at the other stuff and all of them have something that just wouldn’t work for me. Has anyone had issues with a new neurologist trying to switch up meds?

[pennstater]

Welcome back. Glad your MRI was pretty much good news. Hoping you and your new neuro are a good fit and you get the support a good doc provides.

[Mamabug]

...
I plan to stay on Copoxane and am really hoping my new neurologist will agree and not try to switch me to something else. I have looked at the other stuff and all of them have something that just wouldn’t work for me. Has anyone had issues with a new neurologist trying to switch up meds?

No issues. A positive experience, actually.

I'd been on betaseron for 5 years with my neurologist. My MS remained fairly out of control during those years. For years, he suggested that , maybe, i should try copaxone instead. But he didn't ever follow through with the switch, and I didn't know enough to advocate for myself.

I decided, with his support, to switch to an MS specialist because of my atypical symptoms.

At my first MS specialist visit, new doc had thoroughly read my 2 weeks of Mayo clinic records, my 5 years of neurologist records, my 7 MRI's, etc, etc.

She told me that, if a patient is continuing to have one flare per year, on an MS med, that the med is only "borderline effective". "You aren't even borderline," she said.

And she switched me to copaxone. I used to have 1-2 flares per year -- all required hospitalization. Since my switch in 2008, I've had much less frequent and less severe flares. No hospitalization since 2010.

So, yeah. She recommended a switch. But only because I was on a med that was ineffective for me. If copaxone is working for you, you likely won't be pressured to switch.

[msgijo]

Has anyone had issues with a new neurologist trying to switch up meds?

For me the opposite occurred. I went from a general nuro to an MS Specialist hoping to get on a stronger med, but they kept me on the one I was already on . In fact when I left there and went to my current Neuro he has done the same.

[Daisycat]

So today is the first “anniversary” of when my life ended. (When my double vision started) it was at 1236 pm and I remember exactly what I was doing. Friday is going to be just as bad since that’s the true anniversary of when I lost everything, but I’m getting my hair dyed, 4 piercings, and a tattoo so that’ll help me not spend my day drinking all the alcohol. .

I’m starting to realize more and more I’ll never be happy If this curse is true. I had so many things planned and now I have nothing. My old neurologist made things 100000 times worse. .

I hope I’ll feel better (not happy or normal since that ended last year) but at least better enough to go through the motions of “living” .

Now I’m going to go back to crying and Netflix binging.

[gargantua]

I hope I’ll feel better (not happy or normal since that ended last year) but at least better enough to go through the motions of “living”.

I totally understand the idea of just going through the motions. And you know, that's how we sometimes keep heading in the right direction - by following our original intentions in life at least on some level, until some good things happen and/or things come into perspective. Sending you light, Daisy.

[Tawanda]

I totally understand the idea of just going through the motions. And you know, that's how we sometimes keep heading in the right direction - by following our original intentions in life at least on some level, until some good things happen and/or things come into perspective. Sending you light, Daisy.

Yup, me too, but looking back, I was she'll-shocked for the whole first year, but I had a three year old that I had to take care of no matter how I felt. That drove me through it. Now that she 17 and drives herself (that was my last official kid job), I have somewhat lost my bearings, but I refuse to take another year "off" of my life because of it.

Daisycat, I do not know anyone who said their first year was a picnic, but you made it through that. Nobody is HAPPY HAPPY all the time...trying to be happy 24-7 is a recipe for failure BUT don't you think it's time to start finding pleasurable things in life again? I actually do get the feeling you are beginning to make process though.

Your posts have brought a lot of members out from the trenches, too. That's great. You have veterans and new-bees alike all rooting for you, and analyzing their own journeys in a constructive manner...thank you for coming back. You are obviously a valued member here (although not like is a club anyone wants to join, but nonetheless, here we are supporting each other...yay us)!

[Daisycat]

All I have to worry about is taking care of my pets. I just hope I am able to be “here” enough to take care of them as long as they are alive. My dog is the only one I am not sure I’ll be there for because she is only 5. It makes me very sad that I’ll never know the joy of a new puppy… but I can’t do that to an animal.

I just hate how anything that I mess up on now I assume it’s because my brain is dying. I have accepted that I will never be really happy again. That died along with my future last September… now I’d just settle for making it through the day without crying.

I know my view isn’t popular with a lot of people here, but I am just being honest about how I feel. When I went to the ER the LAST thing I thought was XWV. I figured it was just stress/lack of sleep. I never thought at all that they would tell me I had no future. (which is what I heard NOT what they said.)
They didn’t really say much… to this day I haven’t had a real talk with a DR about what this means…Unless you count dr google.... but he has convinced me I am going to have locked in syndrome. Hopefully when I get a real Dr I can leave Dr Google behind.

[Mamabug]

All I have to worry about is taking care of my pets. I just hope I am able to be “here” enough to take care of them as long as they are alive. My dog is the only one I am not sure I’ll be there for because she is only 5. It makes me very sad that I’ll never know the joy of a new puppy… but I can’t do that to an animal.

I've always been confused when you talk like this. You are aware, I assume, that MS is not fatal. I don't think any of us worry about our pets outliving us. We don't even worry about not being physically or cognitively able to take care of them.

Some of your posts just don't make sense to me or reflect reality. They make me wonder how much you know, and don't know, about MS. If you are this misinformed, no wonder you are depressed.

[Daisycat]

I’m only worried about my dog out living me, but that would only be if this curse progressed to a certain point. I’m worried I won’t be able to physically or mentally care for them. And I am aware that this curse itself isn’t “fatal”. . What I know about this curse is what I’ve learned from the only dr I’ve had dr google. I learned most people eventually need assistance walking, it is likely to lose vision, “cog fog” is likely. Basically any part of your body can be affected depending on where the lesion is.

[sarabeach123]

Daisy - it wasn't until about the 1 year mark that I realized that I needed counseling. It made a huge difference. Please consider seeing someone.

By asking you to consider therapy, it doesn't mean you should leave this place. Your posts have certainly sparked a lot of discussions and have really helped me reflect on my journey in life.

[Jules A]

I don't think any of us worry about our pets outliving us.

This is one of my biggest concerns and the reason the last kitten I adopted was when I was 48 years old. I may do another dog or two as the big ones aren't very long lived but no more kittens that have the possibility of living 20 years. When I see advertisements for old animals at a shelter it breaks my heart. I have made arrangements in my will for their care but still my goal is to outlive my babies.

[Mamabug]

...
By asking you to consider therapy, it doesn't mean you should leave this place. Your posts have certainly sparked a lot of discussions and have really helped me reflect on my journey in life.

Yes; counselling need not be an alternative to MS World. Many, many of us have done both.

We're peers. We offer friendship. We "get it" in ways that a counselor cannot.

They are professionals. They can help us to process our losses and look towards our future in helpful ways.

We're different but both helpful.