Hello. I am new to.your forum.

[bama88]

I just recieved my diagnosis from.doc. I am the grand prize winner of ms lol

I knew something was wrong. I get weird eye vision. A one eyed blindness. Along with all the tingling sensations.  Ive lost a bunch of weight. Muscles.are shrinking. Cant swallow some.days.


How do you live with this. Or manage this. I have so many questions.

What about the injectables. Is it worth it

I need as much info.as possible.

I am scared. Depressed. Please help me wrap my mind around this

[kwarendorf]

I also rang all the bells first time through :-) MS is serious stuff. Finding out you have it is a major league kick in the shorts. I was blessed with the knowledge that I have secondary prgressive MS in Oct. last year.

After a brief period of WTF!/freaking out i decided to figure out what having MS means for me.

it's not fatal.
I'm fully mobile.
I go to work 5 days a week.
I can easily care for myself, 2 cats and 2 birds.
Some days my legs don't work/feel so good.
If I get hot enough i get double vision.
Urintating is not just a job, it's an adventure.
I have ED.

All of the above is very manageable and leaves me with the prospect of a long and fulfilling life :-) Don't get swamped by what MIGHT be, focus on what IS! This has made knowing I have MS much easier for me :-)

Kyle

[caregiver2stepmomwithms]

here is the link to the national MS society I posted earlier today on one of your other posts about relapses this site will help you learn some different things about the ms treatments,types and therapies and also medications http://www.nationalmssociety.org/living-with-multiple-sclerosis/index.aspx  my stepmother is currently on Avonex right now and does  pt & ot three time a week where they work with her on her muscles and controlling her spascity or tone as they call it from her MS they also work with her on her cognitive skills which is one of the things that is affected by MS, I talked with her dr's about sending her to a specialized rehab place that focused specifically on her MS and getting her mobility back so that she can won't be confined to just her wheelchair for now, as soon as her leg muscles are stronger and she has more balance she is going to start doing pool therapy which is very good for people who have MS. Dr. Terry Wahl wrote a book about her struggle with MS and how she deals with it from day to day but as long as you keep active and make sure that your diet is good that helps to continue fight this Monster that steals away your freedom and confidence and Independence like a thief in the night & hopefully with the Myelin Repair Research they are doing at the Myelin Repair Foundation maybe one day in our lifetime they may have a cure for MS and or how to repair the damaged Myelin in the brain from MS or both hope this helped you.

[Guitar_grrrl]

Hi, there, and welcome!  I'm sorry you've been diagnosed with this MeSsy disease.  You're in good company, here.  

I've been diagnosed just 3 years, now, after 20+ years of symptoms.  I'm STILL trying to wrap my head around this!  My MO?  I try to live well in spite of this stupid MonSter.  I ride my bike, practice Yoga, eat really good, pure food (organic, grass-fed,free-range,no additives), and I laugh a lot!  You gotta keep a sense of humor intact, or you fall into the "Suck" as Marc Stecker puts it.

Hang out with us, here.  We're here for you!

[supermum_ms]

Hi and another welcome from me, to our little corner of the web, our health pages have the answers to many of your questions, and some you've never thought of yet, have a read through them if you can.

I'm pleased to hear/see your not giving up on your self, 'just dx' can be a difficult time for many people, short fall into a pit of depression, knowing that and fighting it will make the journey less bumpy, oh screaming at the moon helps to take the edge off, though the neighbours might wonder if you've lost your marbles lol

No doubt this is a world of 'weird', no question is off limit here, just ask and funny enough, you'll find that a sx no one if your real world understands, someone here will totally get where your coming from. I'm sorry for your dx but not sorry you've landed here, great place and even better people. ;o)

Cheers........JJ

[tingletingle]

A very warm welcome from me also Kat,

I hope you can find real comfort and peace in this safe place among friends who care about you because we share in what you are going through.

My journey started one year ago and I wouldn't have imagined how my life and my perspective has changed. As the wise Lulu suggests, take some time out to read and understand more and more each day about this thing called MS.

The bell has only just gone for round one fellow prize fighter so take it easy, conserve your strength for the long journey ahead. Remember you are never alone with MS because we are right here.

Blessings
Alex

[JaneK1975]

... just another welcome note from a fellow prize fighter. I'm glad you joined us. We share info here and it helps us all learn. I'm pretty new to MS, too (diagnosed last December). Maybe if you have a chance you can post an "introduction" thread and tell us a little bit more about yourself. It's great to meet you and welcome! :)

- Jane

[Lulu54]

this is all so new to you, I hope you will take the time to slowly gain knowledge and process this diagnosis.  MS is  almost always a slow moving disease and you don't have to rush into most decisions.  It is too easy to be overwhelmed by all the information on the web about MS, and be sure that wheverever you consult, it is based in facts.

This place gets pretty quiet around here most weekends, but be sure to post your questions and someone will eventually get back to you.  there's a lot not yet known about MS, but a whole lot more that is being discovered regularly.

Welcome to the club no one wants to belong to - you are in good company.
best,
L

[bama88]

Sorry. I do that sometimes. But I.changed my diet. Well I am gonna get more opinions. And keep.researching. I.just learned this mess wed. So I.just dont know what to think yet

[bama88]

Thanks.for.the responses. I have no plans on giving up lol. I went thru a knee replacement last year. And have 100% mobility.  I am working full time. On a boat load of meds.

I started to.research my meds and was like hey this is for ms. why am I on it??

In a way its a releif to know what is wrong with me. I blamed vision issues on because I look at a sreen all.day. Or read. I just thought eye strain. And I blamed alot of symtoms on pain meds.

But the symtoms never went away. They come and go. I.can go.for.several months and feel great. Then bam these weird things happen.

The first was the jerking and shaking. And loss of.weight. My nero always kept asking me what I was doing to loose all this.weight. I.said
nothing. Except exersise and chang

[maxthecat43]

Welcome Bama,

Please post your story for us, okay?  As Bubbles already stated, this is a wonderful, supportive place. It's actually kind f unique...  

A good place to start is the health pages.  There is a lot of very useful information there.  Seriously, learn as much as you can, as fast as you can.  I don't think you can be too well informed.  The CRAB drugs are good, but everyone will have a different course of ms, even while taking the therapies offered.  It's good to do some research first, and then discuss your decision with your neurologist.  

Also, it's good to be aware, that you will probably go through a mourning period.  This is normal, and even healthy.  As many others told me- over the first year after diagnosis, your emotions will be all over the place.  Just be sure to give yourself the time to grieve.  There are support groups for people with ms too.  Contact the National MS Society too.  There's a ton of useful info there too.  

As for managing symptoms, that's something we're always working on here.  We share what works for us, and what isn't.  This place (and the people here) have been enormously helpful for me.

I hope we'll keep seeing you around here.
Tammy

[twopack]

Hi and welcome to the MS community.  We're glad to have you join us but sorry it was the prize patrol that brought you.  This first year after diagnosis is the hardest.  There are lots of adjustments and learning.  It is entirely possible though (maybe even probable) that you will experience some symptom improvements along the way.  MS is a windy, up-and-down road.  

Depression and anger would be natural at this point.  Depression can even be part of the destructive brain process that happens in MS.  We'll help where we can and your health care team will as well.  

Just don't give up on YOURSELF.  The joys and potentials of quality life remain well within your reach.

I take Copaxone.  At first, I didn't think I'd be interested but I am glad now that I took the opportunity to actively fight this disease.  I do believe it has helped.  You'll find someone here who is using - or has tried - almost every disease modifying drug available.  There are also therapies, lifestyle changes, and drugs that sometimes help with individual symptoms.

There is a box along the right side of the screen headed “Most Viewed Health Pages”.  You can pick a subject or drop to the bottom and “See all Health Pages”.  There’s lots of valuable information there, most of it written by community members in easy to read styles.  Ask as many questions as you want but don’t forget to inform (and amuse) yourself in our HealthPages treasure chest.

Looking forward to getting to know you as you feel comfortable sharing.
Mary

[bubbles_04]

Hi Bama,

I'm a new grand prize winner of MS too. Was Dx offically last month after 4 months of testing. On each test I won, with lesions in my brain and spinal cord and a pos LP. Lucky us right? I'm so sorry your symptoms are so bad, what type of Ms do you have? I have RRMS. So far I'm a lucky one, I've had two attacks with both involving numbness and pins and needles in hands, arms and legs.

As for the injectables, I'm just not sure myself yet honestly BUT I'm starting copaxone on saturday. I figure I have to try and slow the progression, my neuro will closely monitor me and if its not working we will try another CRAB and another... We gotta fight it right? I think for some people the CRABs work really well. I've heard stories of people who had two relapses a year going to one every 5 years. I think its worth a try.

The depression is normal and as first its going to be hard to except, but what choice do we have? We have MS and we have to cope and fight. I know we can and just maybe it will make us better people. I eat much heathlier now, I drink less and no longer smoke at all. I used to like a ciggy when I was out drinking.

Sorry I'm rambling on, but would like to say one last thing. As a very good MS specialist said. MS is not a cancer, it will not kill you. The treatments are getting better everyday. There is so much research going on. So much support out there. MS can not stop you, you are not stuck with MS its stuck with you. You can do this.

I hope you stick around here, this forum is amazing and everyone is so lovely and supportive. It's helped me alot.

Hugs,

Kat