I’ve spent the last couple months letting it sink in that I do have MS. I remember saying I may have MS but MS doesn’t have me. Guess what, I was so wrong. MS does have me.

The worst is the emotional roller coaster. I can't seem to get my head together. My emotions are up and down. We’ve tried Paxil which didn’t do anything. Now I’m taking Effexor and I’m starting to see some light.

I seem to function alright at work, but at home it's very different. I am making the effort this year to reach out for support to get myself back. I tried to do it alone, but it's not working. I also never tried to get help as I feel like I'm just whining all the time. I’m very independent and proud and don't like to ask for help, but I realize now I have to.

I had to go to my neurologist Monday because I started bruising all over especially at the injection sites, around my eyes and my gums started oozing. I’m also flaring big time right now, numb legs, chest pain and my vision is all smoky.

It's a side effect of the Copaxone so he is taking me off. I thought I was doing so well with the shots and had no major side effects. I am on IV Solumedrol to cut this flare. Then we are going to try Rebif but also talked about Cytoxan and Tysabri.

I’m just feeling so overwhelmed and alone right now. I’ve never belonged to a forum before so it’s all new to me.

I'm so sorry your having such a hard time with all that is going on with your bod. Hopefully your doc can find the right combination of meds to help you. I don't have MS but my hubby...the Olhipie was diagnosed over 23 years ago. I still am baffeled at times as to what he needs. I guess love and patience is what I as a caregiver have found helps a lot.

Take care of you and get some rest and eat the right things...hmmm I sound like a Mom...I just know that helps my Dh.

No advice here sorry but just wanted to let you know that you landed in the right place here at NT. Lots of listeners and advisors will help you out but sometimes its just enough to let it out and get it off your chest.

Hi and welcome,
I'm glad you reached out to us. The folks here are a wonderful source of support as we all try to navigate this miserable disease.

FWIW I hate that saying about "MS doesn't have me"...it sure as $&!# does have us! I think the best we can do is live each day as it comes, continue to proactively plan for our unsure future and hold out hope that we will have many good times in the years ahead.

I hope you feel better soon. Jules

It sounds like you are going through a very difficult time, Thumper.

I remember saying that I just felt like "a non-gendered ...(blah, blah)... lump of pain" for a period of about 2 years, and by that point, I really couldn't see a light at the end of the tunnel. I did find the right drug for me though, and things turned around enough that I could see living beyond only the minute I was trying to struggle through.

It is going to take time to adapt to your new reality, and to find what works for you as an individual. Just keep taking one step forward until you find that, and get through this difficult transition.



Cherie

I'm sorry you're having such a hard time right now. When things are not going well it seems like it's going to last forever.....but it won't. If the Copaxone isn't the DMD for you then keep trying until you find one you can tolerate.

I took Copaxone first and it didn't work for me, either. Then I was on Beta for a while and it made me feel terrible. I'm on LDN now and it's worked wonders for me. So, you have to sort out the ones that don't work till you find one that does. The side effects of some of the DMD's are worse than the actual disease itself.

You've come to the right place, though, to vent your frustrations and find friendship with people who actually understand what it's like to have MS. I hope things get better for you. It's a slow process but it'll happen.

We must have been separated at birth! I, too, have always been stubborn, independent, not wanting to ask for help for fear of sounding too whiney...Fortunately, I come from a family of stubborn Norweigans who are even MORE stubborn than I ...
MS has me, too..I slap it around a little, but it has me. I hope you and your neuro can work out a treatment that will treat you more kindly (and above all work!).
I'd never been much for online forums either, until I was dx'd with MS. I think you'll really like it. It's a safe place to talk about what's up with you, you're life, MS, etc..Such a relief to be able to talk to someone about this stuff...And you'll never find a greater bunch of people!
Just hold on..You're not alone!

Thumper sorry you are down right now, but thats just it now not permantly, you will shake out of it the first year is so over whelming, we all lose our minds at this lovely news of having MS i was on something that really helped fight the aniexty and that in turn helped me think clearer and it helped a lot(lexapro was what i was on), talk to your doc about something that can help take the edge off. i hope you can get this settled in your mind soon, cause it is an illness that can be lived with, its a PITA but it can be done, hang in there Thump

I like that phrase Frank..PITA. I usually reserve that for my visit every month.

The best way I can explain the Solumedrol experience for me takes me back to my early twenties, when I was so desperate to diet that I tried every new diet pill that came on to the market. When I tried diet remedies coupled with coffee, I felt nuts, shaky, queasy, like I was running in invisible circles. I feel that way with the Solumedrol. My hands are shaking so much I can barely type. My face and hands are swollen, as are my feet (which make it difficult to squish into uncooperative shoes).

I tried to infuse early in the morning in order to be able to sleep at night. I also medicate with Tylenol PM and a small dose of clonazepam. Sleep’s not escaping me, although by 6 a.m. my eyes are bugging out of my head and I’m wide awake.

Now I’m on a yoga cool down – the Prednisone taper in the form of a pill. I don’t know if I can last the 12 days with it. I just dread the thought of putting more steroids into my exhausted body. I was hoping the minute that port went into my arm that I would feel better. It doesn’t seem to work that way.

So, I’m accepting that while the yoga has begun it will be a few weeks before I feel “better”.

Thank you all for the replies and the welcomes. I'm feeling less alone already. I hope that I can fit in here, like I said I never did this before. I tend to bottle things up until it spews out all over. Not a pretty sight.

did they give you pred or the other one medarol(sp?) pak, the second one is easy, the preds, well stay away from sugars and starches that will help in the wieght area, other than that try not smacking the first person that cuts you off lol yeah I have no words of wisdom for the preds, they can get your body revved up big time, and dont be fooled by the pseudo energy those preds give you, and dont forget you always have here to help your mind and feel better folks here are so kind its a godsend thats for sure