Newly diagnosed and totally lost...HELP

[flipz11]

Brandy,
"The not knowing what will happen and when it's going to happen, scares me the most." This disease is full of uncertainty. I as well as many others can relate to this. My dad has had it for most of my life. He actually has SPMS, and I watched him go down hill to where he is now and that was almost as difficult as knowing what MS can do. Best thing anyone could tell you though is everyone is different and stay on your meds.
My parents are divorced so I know that it got to be pretty hard for my mom and stepdad to understand because they just wanted me to be happy (they had never dealt with it first hand). Even my boyfriend still does not understand I get tired easily. Hang in there. It is normal to feel like no one gets you.
Kayla

[momof4boys]

Brandy~ I understand what you are going through..I was just diagnosed last week. I don't have very many answers as I, too, am just trying to figure it all out. However, I had similar problems with the sleeplessness and they contribute that to the steroids .. are you taking them at home now? If so, try taking the dosage as early as possible in the day.( at first i was taking 20mg 3 x a day..bad for sleeping) the Dr also gave me 5mg of ambien. The combination of these two changes have helped me string together 4-5 hours of sleep.
hope that helps amy

[Kraheera]

I was diagnosed in Sept 2011. I am 26 years old. I have two darling angels, a two year old boy who is a complete drama queen, and a 7 year old girl who is also a complete drama queen. I'm not sure where they get it, but at least they keep me entertained when I don't want to pull my hair out.

My husband is overseas. Stationed in Japan. We're trying to get him to PCS somewhere, because I can't go to Japan with this disease, according to the military anyways.

At first, I think I might have been in a bit of shock. I handled it well. I just kind of laughed it off, did as I was told. I picked Copaxone for my med. I let a few people know.

NOW is when I'm having trouble. I don't even want to take my shots. I have to drag myself around the house. I have to listen to my parents during phone calls harp about this, and that, and "we are worried about you and think it would be better for you if you do this" blah blah blah.

I love my family, I do. But I hear you. They don't get it. They probably won't ever get it and in a way I'm kind of happy about that. It means they're healthy and happy. But things suck right now. All I can say is that you have to take some deep breaths and plunge back in. This board is a lifesaver.

[Brandy_Wine85]

I agree... This board has helped tremendously
!!!

Well a quick update since I last posted... I was just re admitted into the hospital tonight for what I can only assume is another attack, this one being much worse than the last. Having another lumbar puncture tomorrow morning as well as an MRI to follow up since doing the steroid treatment a few weeks ago. Last time I went in i was here for 2 weeks and that was exactly 2 weeks ago to the date that I was released and was diagnosed...and now I'm back AGAIN.

I'm being told that not only am I dealing with MS but they are also pondering if I may have intercranial hypertension since the two seem to run hand in hand and sending a neuro optometrist to re acess my vision. Not sure of those on here that believe in God, but if so please send some prayers down this way.

Will update when I get the chance!!!

[dolule]

Here is some hope for you: I had my first symptoms when I was 31. I'm now 60. For most of the first 20 years, I had mostly mild, although weird, sensory symptoms. Occasionally, I'd have a more serious relapse that might resolve completely in a couple days (loss of central vision) or several weeks (double vision one time; vertigo another) or a few years (loss of fine motor control in my dominant hand). Each of these symptoms was a one-time deal and hasn't re-occurred.
I am now disabled because of fatigue and muscle weakness. My bladder doesn't work well. I can't do many things that most 60 year-olds can do. On the other hand, I don't know any 60 year-olds who don't have there own problems.
When I got my first symptoms, there were no treatments for MS. Now new meds are coming out all the time. Meds that help prevent damage and soon maybe meds that repair damage. So much more is known. I was in the clinical trial for Gilenya and haven't had a relapse or progression of disability since I started it five years ago.
When I was diagnosed, my husband said "We never know what will happen. I could get hit by a car tomorrow." And it's true -- MS is just one more factor in the uncertainty that is life. Try not to waste your time and energy worrying about things that are out of your control and that may never happen. Cherish life's beauty.

[cranberrysauce]

Sorry to hear you're back in the hospital!

The beginning is so tough. I sort of lump my first couple months into one big jumble since there's so much discovery and it can take a while for the right treatment to kick in. I just had an appointment today and we were going over some of my history and I barely remembered the events and the order they happened at first since its just so much to take in.

You will get through this first bout. You'll get into the right drugs and treatment and then you'll have time to process all this. There's nothing like time to help figure things out.

We all come up with ways to cope and adapt. Some days are good, some days are bad. I just learn to love the good ones and find ways to deal with the bad ones. People here can give you lots of tips for specific issues with drugs, symptoms, etc.

Coming here means that you're actively doing something to take control of your life, keep it up!

[AnonyMS]

How and when did any of you finally come out and share the news with others?

After months of double vision and finally getting an MRI, I was diagnosed over the phone (really..). I was at home working all by myself.
I called my mom who lives a few states away, told her the results and I could hear and sniffle, she mumbled "I'm sorry, I love you" and hung up. She called back hours later, she was pretty upset by the news as was I.
After 9 months, I have not been able to shake off the same exact loneliness I felt at that time. It is with me daily.

Please be self-aware about depression with MS. It is a very serious issue, that I don't think the doctors take serious enough.

[iwillcometoyou]

Hey

Brandy Hey just decided to create a login and reply to your message I was just dx and I am 26 also. I will be 27 this month. It would be great to talk to you. I feel terrified. Now infact I'm probably creating more symptoms then were really ever there . . . I'm just soooooo scared. I feel so alone and like no one really understands. I cry and they ask me whats wrong. . . .Like are you kidding me???? Hello! What do you think is wrong. I know they only mean good. I guess it's just so hard to deal with. But reading your post and others responses really helped. I had put off signing up because I guess that would be admiting that it's really true. Ugh.

[iwillcometoyou]

Private Message?

Just wondering if there is a way to Private Message people. New to the site and clearly don't know what I'm doing lol. Thanks!

[Sequoia]

Just wondering if there is a way to Private Message people. New to the site and clearly don't know what I'm doing lol. Thanks!

MSWorld does not have a Private Message feature. If you wish, you may put your email address in your Profile for all registered, logged-in members to see. People can contact you that way, and you can contact them if they have their emails in their own Profiles.

[Nanobaby]

Brandy:

For sure it's normal to not be able to express how you feel.

You have already started accepting and dealing with your diagnosis - The first step was joining this board.

I only joined this board a few weeks ago and I was dx in 2008 talk about denial So you're already way more ahead than I was!