i need guidance....

[BittyBee]

First of all, hello to every one! i found this site a coup[le of days a go, and everyones questions and post have alrady been a huge help. So thank you all for being so honest, open, and informative.

I was diagnosed a year and a have ago. My truely bad symptoms came on fats after a period of extreme stress. I guess I was lucky that I got a daignosis so fast, but when I went to the ER I really was expecting them to just tell me that I had a pinched nerve or something to that effect. not " your brains really swollen and you have a bunch of lesions so were pretty sure you have MS and have to be admitted."

So I knew nothing about MS, and for the most part I've just been trying to figure everything out on my own. I guess I really just have A LOT of questions still. Like are your symptoms something that really does affect you everyday? Does anyone else have issues with really bad depression on a wole not just occassionally? Does your life really go back to normal, or am I just trying to find a new normal? Basically I need any advice I can get. I'm trying my hardest to do all that I can to be "normal" again, but I'm back to crying evrytime I think about the disease, the doctors, the finacial cost, and now how a lone I feel even with the support I have.

BTW way I'm crying again...so I hope what I typed is what i meant to. Thanks for any help that anyone can give me.

[BittyBee]

thanks! Do you cry constantly and then can't stop when you start? ...feel free not to answer this. i do push through. i love to laugh and try to do stupid things that make me laugh, especially if im by myself, and i do make list.
i've spent a lot of time alone at my house lately. my boyfriend works at night about half of the week, then i look around at the house and it's always messy and then i spend my self on a downward spiral about everything. i guess that this maybe the hardest part. i've always been a perfectionist about having to be able to do everything, and now i can't. that's very hard for me to accept. i really don't give myself credit for what i can and do manage to get done.
i will keep pushing through. i've always said if i have nothing else in my life atleast i have hope. thats just my natural mentality. that probably what is going to get me through this in the long run. thank you again. its comforting to no that other really do understand what it's like.

[Antalya]

Hi !

I have had tremendous problems w/ depression also since my early 20s. And yes, I was diagnosed with being "a little" manic.  It's hypomania.  Not uncommon I don't think.   Plus I think there are areas of our brains that get lesions that are directly related to depression (at least that is what my neuro said).  I am currently on 1500mg of depakote,  450 mg of wellbutrin,  100 mg of prestiq and 25 mg of adderall.  Plus my MS meds.  And all that depression med has taken a lot of tweaking.  It's still very hard to get up in  the morning - but it isn't as black and impossible.

Something that sounds very Pollyanna-ish but I have found that it helps me to keep a list of things I am thankful for every day.  Include small stuff - nice day, pretty clouds, great cup of coffee, good talk w/ a friend, organized a drawer, fun movie----- at least 3.  It really helps me to re-read when I'm feeling awful.  

NOT fun tho!  Just keep forging ahead to find answers.  At least a big part of it is just perservearence.  (sp?)  

Good luck!  Keep writing........  hopefully that helps too!  Wishing you the BEST.  

[BittyBee]

Thanks for responding. Long story short you two got me thinking and I'm blaming a lot of my stress on the Ms when it had a lot to do with nothing related to the Ms. Its just the Ms affecting my ability to deal with it the way I use to. So I guess this is one of the Ms learning lesson of my new normal. Thanks again!

[kwarendorf]

A year ago you were told:

"You have a disease that may or may not effect you every day. When it does effect you it may be just annoying or it may immobilize you. We don't know. And oh, by the way, there is no cure for your disease".

This is pretty heady stuff to digest. We all digest it in our own way, at our own pace. As TLC said, MS is different for each one of us. You have a year's worth of experience under your belt. You should probably have a good idea what your normal is.

I have symptoms that effect me every day. They are annoynces in the context of big picture. I have double vision for the first couple of minutes every day. I have urinary hesitancy and I tend not to empty my blader completely. I have tinitus. None of these things keep me from leading a happy productive life. As TLC said, to the outside world my MS is invisible, but I know every day that it's real.

Try not to let you MS take command of your life. Don't dwell on the fact that you have MS, rather shift your focus on to all the things you can do :-)

Kyle

[BittyBee]

Thank you for the replying. I guess that is more of what I am looking for is othe peoples experience.
I feel like since it has been a year and a half i shouldn't feel as emotional as I do. I've been on anti-depressants since a month after my diagnosis, and I've struggled with depression since I was 14 (almost 27 now).  It just seems so much worse. I went to the psych in Nov. and he said it sounds like I may be a little bi-polar on more of the depressive side. Which only confused me more. I didn't realize you could be "a little bi-polar."
I know psyichiatry isn't an exact science but then I question if he really know how to deal with a pt that has MS. I went back on a good day so maybe I need to have him adjust my meds more. I do go back to the nuero before I see the psych again.
I'm just so confused and over whelmed, and can't keep my thoughts straight. I'm not on an interferon either...I'm suppose to be on Copaxone. (Which is something else i need to deal with today...thanks for bringing that up I have to call them and i totally forgot about that) They first started me on Rebif, but my depression and anxiety went through the roof.
Going to call the copaxone people, thank you for unitentionally helping me remeber that!

[TLC_31]

MS is so different for everybody, and to answer some of your questions about all we can do is share our personal experiences so that you might learn from them. We hope you will share too as time goes by.

First I’ll address depression, because it’s most important, although I don’t have it (at least that I’m treated for it). It is very common with this disease, and it is also a common side effect of the interferons many of us take. I encourage you to bring that symptom to the attention of a medical professional.

My symptoms do effect me every day. People who don’t know me (and some who do) would never guess I have MS, and people that know sometimes forget I have it. I don’t forget, although for me it’s an annoyance more than anything. My life is very “normal” now about nine years after diagnosis, and yours can be too.

I’m sorry that you’re feeling the way you are, and I understand that it’s scarier in the first months after diagnosis or every time there’s a relapse, but I hope I can offer you some reassurance that you’re not alone, and that we can fight this disease with the many tools available to us.

Ask questions anytime!