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

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:

hi thumper,

i'm really sorry that you're having such a hard time right now.
i think part of being independent is giving yourself permission to ask for help.

i hope each day will bring some improvement.
glad to have you here.

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:hug:

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

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. :o

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

I had to give it a couple weeks after I'd finished up the steroids before I began to feel better again. Hang in there! :hug:

I almost smacked someone in the church parking lot Frank because she was taking too long to get out. :rolleyes: I'm tapering on regular prednisone, 200 mg for 4 days, I'm only on day 2 :(, then decrease it by 10 every day until I'm done.

This week was very long and I’m so tired, physically and emotionally. It's been so hard for me to accept that I have MS.

When a second neurologist reviewed my records and MRIs , I had an episode of S.O.D (Sudden Onset of Denial). For about 45 seconds, I wondered if she was going to tell me I did not have MS after all and that it was all one really massive medical mistake. I pictured the ensuing court case, the insurance settlement, maybe being on Judge Judy, and the awkwardness of telling everyone, "Just kidding! I don’t have MS...I have an inner ear problem!" :D

I'm just feeling a bit overwhelmed by it all at the moment, not whining. I think there's a difference, I hope so. I'm proud of myself though for reaching out, that's so so hard for me to do. :o

Welcome to NT, Thumper. Good luck with the steroids. Some do well on them, others do so-so, and others just take a while to get used to them. Hopefully you won't have to do them very often.

Some docs don't believe in oral taper and some patients (like me) refuse to do the oral taper! I sleep a lot with the solumedrol so can't relate to the non-sleep issue but know that a lot of others do. It does, however, take a few days or up to a couple of weeks for it to work. So hang in there.

Stay positive (I know it's difficult) and you've got a lot of support here. :hug: Even if we are mostly a bunch of loonies! :eek::rolleyes:

Hi Thumper... I haven't been on for several days, but saw your thread when I got on at work today. I can so relate. It can be really difficult to just wrap your brain around the idea of having this disease. The only thing that has kept me from completely losing it is having the perspective of others going through the same thing.

I started into a relapse right before Thanksgiving and I'm on the last 5 days of oral pred right now. It was an interesting holiday season. Thankfully I have a very patient and understanding husband.

I hope you start feeling better soon... and I believe you will. I remember with my first attack I thought that I would never improve. But I did... eventually, it took time. So here I am, 3rd relapse since my dx 2 1/2 years ago frustrated that I'm not feeling better quicker. Patience was never something I had an abundance of.

:hug: to you!

Thumper, hang in there. I've been lucky. I've been on Copaxone since dx in 8/05 and have no reactions to that, but have gone through a lot of meds to tx my major symptom-pain. Just when you think something works....Anyway, my mantra is adjust and adapt. It doesn't mean giving in to MS but it helps with the rollercoaster ride of MS. I'm glad you found us here. Hang in there and don't be afraid to post. I'm fairly new this site and had never posted in a forum before. There are some wonderful people here at NT. Hope you feel better soon. Hugs and doxie kisses

:circlelove:((((((((((Thumper))))))))))


Could I have some of thoses Doxie Kisses, DoxieM?:D

All I know is these steroids has me looking like the Stay-Puffed Marshmallow Man (except I’m a woman). I am so swollen that the skin on my face is peeling and my shoes have all shrunk in my closet! So if you have the pleasure of seeing me in Marshmallow mode feel free to bring along the graham crackers and Hershey bars and we'll just make S'mores together. :D

mmm now I have a craving for s'mores - thanks for that.

I usually look like a big, red, angry tomato :mad: My face gets so red and fat and I get really, really mean. Luckily the puffiness should go away relatively quickly after you stop the meds.

I don't have MS but what I have leaves me pretty much inactive and my advice is find the best med that allows you to do as much as possible and try to keep depression at bay if at all possible because it only makes pain worse and takes you to dark places you don't want to go!
Good Luck to you,
Junie

This disease just plain sux :(. It's so hard to get the meds just right. I've been dx'd for about 1 1\2 yrs and I've been on Copaxone, Avonex, and Tysabri. Right now I'm on no dmd for the time being. I'm so sorry you're having a tough time right now :hug:. Everyone here understands so feel free to whine like the rest of us :).