NeuroTalk Support Groups - Reaching out in the new year

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Reaching out in the new year (https://www.neurotalk.org/multiple-sclerosis/68189-reaching.html)

Reaching out in the new year

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. :o

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.:hug:
http://i275.photobucket.com/albums/j...ugs/hugs-3.jpg

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.

:hug: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! :mad: 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. :hug:

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.

:hug:

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. :hug:

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 http://www.mskurmudgeonskorner.com/f...lies/opera.gif...
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!

:hug::hug: Hope the next DMD treats ya better. :hug::hug:

Can totally relate to what you posted. I'm a "creatively independant" (aka stubborn :D ) person, and I often feel like I'm whining. But here, everyone understands the ups and downs of this wacky thing.

Totally hate the phrase "MS doesn't have me". It's more along the line of "learning to still live life despite it".

Hang in there, and we're here if you need support or if you need to vent. :hug::hug:

Sorry you are having such a rough time. I totally understand how you feel about trying to find the right treatment. I went through copaxone, betaserson, and tysabri all in one year. Hope you find the right treatment for you.

Eeek, as if a recent diagnosis isn't enough to deal with, that Copaxone reaction you had sounds incredibly scary. I'd have freaked out. I'm glad you made it through ok and got off of it. Don't take it as a defeat. Perhaps the Interferons will work wonderfully for you. :hug: