24 yrs old, just diagnosed

[crazypinkcharity]

i started having symptoms Dec. '10. i am newly diagnosed just this past week and i having a very hard time coping with the changes. i feel like i have nobody to talk to. i have 3 girls ages 6, 5, and 3. my husband is helping alot but i was the one who kept the "family schedule." i feel like my world is upside down. can someone please tell me this gets better! i feel like i can start to except this but i still have alot of vertigo and i think i am experiencing Optic Neuritis which its hard to concentrate. someone please respond with anything!!! also, did anyone go through a grieving process?? and we try to see the neurologist today but was late and had to reschedule for weds well ANY input is greatly appreciated!!!! i need some support!!!

You've got your hands full. Bless You

Hi. I don't have MS diagnosis but I have read a lot of postings by others on here who do. There is first of all a lot you need to learn about MS if you are not a hypochondriac like me then you probably don't know much about it. Please read all you can either online or go to the library and get a book about MS.

There are quite a few kinds of MS. So the first thing to do is to find out what kind you have. And read up on that the most. And as most have discovered, improve your diet and general health as much as possible.

I certainly admire you having such a nice group of children. I know myself I was running like crazy when my daughter or son was that age. So I bet you have your hands full.

I have had ON and other symptoms similar to MS and like to say now that I have a "MS mimic disorder". I recently also found melanoma on my body. Am starting to wonder if my problems are related to that through lungs. Not every symptom you get from now on will be from MS.

A lot of people with MS do not suffer totally disabling symptoms and say on here their symptoms are mild. I hope yours is like that too. If you don't get a lot of answers to your posting immediately;;don't give up. Everybody will be more than glad to answer your postings as time goes on. I think there are more on here on weekends. I am not sure.

Each of the people with MS get to choose their own medication based on their knowledge, inclinations and doctors orders. They seem to think that they help so I think you can get something that helps also. Some of the popular ones are mentioned on here frequently.

Best of luck and children grow up quickly. I miss my children being that age. They love you so much at that age and are always your bright little companions. When they become teenagers they are always gone. So enjoy them now before they start running out with freinds all the time.

Bless you from the ON lady from Oregon

[KoKo]

Hello crazypinkcharity

Welcome to MS World - nice to meet you!

i am newly diagnosed just this past week and i having a very hard time coping with the changes. i feel like i have nobody to talk to.

It can be very difficult to cope with a diagnosis of MS - and in your case you just found out this past week - so emotions can be very fragile right now. It can be quite shocking at first. Maybe by coming here to share what's going on, we can help you get through this stuff.

i feel like my world is upside down. can someone please tell me this gets better!

In the beginning, it does feel like your world is upside down. Hopefully things will settle down for you soon.

also, did anyone go through a grieving process??

Oh yes - most of us go through some grief along the way.

Sometimes when the anxiety or grief/depression gets bad enough that we have difficulty functioning, the doctor can prescribe an anti-anxiety or anti-depressant to help. So if these feelings last awhile and interfere with taking care of the girls, be sure to let your doc know and he can help.

Sorry you missed your appointment today - I'm sure that was frustrating! But they're getting you in soon so that's good.

Feel free to share your feelings, and ask questions. We'll be glad to help if we can.

If you want to, you can also post in the General Questions and Answers Forum, where there are more views by the members. We also have a Young Adults Forum here too.

Take care,
KoKo

[twisterred]

We're here and offering our best support Crazy.
Here is a flower for you:

I was 24 when I was diagnosed.
Life won't be the same, but it can be a really good thing.

I still keep the family schedule.
However, I am waaaaay more relaxed and flexible with that schedule.
I plan ahead and rest for important appointments.

My daily list To-Do list rarely gets completed, but it's OK now.
(Before I'd push through, but now I'd rather let some things go instead of feeling terrible from overdoing.)

I think we've all gone through the grieving process.
There are times I go through that again still.
Most recently, I tried to ride a bike, but couldn't due to my lousy balance.

Time and learning about MS helps.
Boards like these are great.

Learn to ignore all of the "cures" people will tell you about.

Everyone seems to know someone with MS who is doing "great". Keep in mind, people are trying to be encouraging, but they have no idea that MS affects us in many different ways.

Be proactive rather than reactive to the disease.
Exercise, eat healthy foods, reduce stress if you can.
Get help if you need (some people get a house cleaner, I just ignore the dust).

Really consider a DMT.
The earlier the treatment, the better over time.
Time has proven that.
I know the stats show low numbers of helping, but they do help.
Copaxone has kept me going for over 10 years now.

It took me years to trust it might be working, but I kept doing it because my MRIs still look good.

Be OK with the curve balls life throws.
Laughter is good medicine, too.

[MyGirlsMom]

Hello Crazy!

Twisterred said it all so well that I really don't have anything to add. The first year is so hard and especially with young children and trying to run the household. The key is to let things go. I was dxd in 2009 and I am still trying to learn to chill on things as well as get comfortable with my dx. Some days are really tough and other days are better. I too am working on rolling with it.

Twisterred also mentioned about people telling you about others with MS that are doing great. I can't tell you how many of those comments I received from well meaning people! However, I took it personal..."why wasn't I doing great when everyone else seemed to manage their MS?" The thing that I have finally learned is don't listen to those comments.....I no longer belive that to be true (just look at all the posts and struggles on this board).

Feel free to share, cry, vent and laugh with us here...it is a safe place to find comfort and support!

[heliotrope]

It does get easier. I was diagnosed last year at about your age. You learn to cope with symptoms, if nothing else.
In the meantime, please feel free to vent! That's what we're here for.

[crazypinkcharity]

feeling optimistic

thank you for all of your replies.

i finally got to see a neurologist yesterday and since my case has some unqiues findings he doesnt want to totally confirm MS just yet. He will consult other doctors and i have another appt on Monday, so luck! And he doesnt want to start me on any specific MS treatments until he knows more about my condition, so you can relate to why i am feeling crazy. i have alot of symptoms that are not even being taken care of as of yet, i just have to learn to cope for now.

i knew i was having some majors mood swings and partially b/c of the steroids. i feel sooo much better after yesterday, after a doctor explained SOMETHING to me.

i was feeling so lost b/c nobody explained ANYTHING to me until yesterday. so i am finally feeling optimistic. i trying to stay focused on being a good mommy and wife.

i will keep everyone updated on my conditions.

i know i am still adjusting but if anyone can suggets how i can improve me my sleep? it is way off and i dont know what to do get adequate sleep?

[hunterd]

welcome crazy!!!!!!! glad you found this group.
i think the grieving process in a common feeling. you are losing one way of life and starting a new one. i would have to say that being anxious is also common. we, as humans, don`t like change, but it happens, and we are powerless to stop it.
look forward to seeing more of you around.

dave

[twisterred]

The Dr. should prescribe something for you while on steroids to help you sleep.
It only helps some, but is better than nothing.

Avoid caffeine if you can.
Take advantage of the extra energy (ha ha).

There were times I was up at midnight wallpapering or painting walls.

[0485c10]

One thing that really helped me was when someone gave me a more realistic time frame to accept this disease and learn to live with it...i think at first i thought i was suppose to manage everything right away--then he explained to me how big the "project" was that i thought i needed to get through right away---but it just takes time!!!

he told me.....

the first year of diagnosis is just a year from h3ll and it will always be remembered as a h3llish year. nothing can change that, a person just has to live through it.

the second year is a year of stabilizing ones ms on medication. at times it is a trial & error procedure because the first med tried is not always the one that works best all the time. patience is needed during this year.

the third year is a year of learning how to compensate for this disease, learning to live with it.

the fourth year is a year of grieving. accepting that some dreams that were made without ms in the picture might not be practical any more. a person grieves as they give up the dreams and plans made for a future with ms not in it. now ms is a part of the future.

the fifth years is when new dreams are made for the future, dreams that are made with ms in the future. some dreams may just be old dreams slightly modified for this new future. but they are workable dreams

by 5 years & it takes a full 5 years before a person really understands their ms, understand how to compensate for their ms and knows how to dream again.

so be patient with your self. your rushing too much, you have a lot to do in 5 years. now you just have to get through this first year of h3ll!

[0485c10]

One thing that really helped me was when someone gave me a more realistic time frame to accept this disease and learn to live with it...i think at first i thought i was suppose to manage everything right away--then he explained to me how big the "project" was that i thought i needed to get through right away---but it just takes time!!!

he told me.....

the first year of diagnosis is just a year from h3ll and it will always be remembered as a h3llish year. nothing can change that, a person just has to live through it.

the second year is a year of stabilizing ones ms on medication. at times it is a trial & error procedure because the first med tried is not always the one that works best all the time. patience is needed during this year.

the third year is a year of learning how to compensate for this disease, learning to live with it.

the fourth year is a year of grieving. accepting that some dreams that were made without ms in the picture might not be practical any more. a person grieves as they give up the dreams and plans made for a future with ms not in it. now ms is a part of the future.

the fifth years is when new dreams are made for the future, dreams that are made with ms in the future. some dreams may just be old dreams slightly modified for this new future. but they are workable dreams

by 5 years & it takes a full 5 years before a person really understands their ms, understand how to compensate for their ms and knows how to dream again.

so be patient with your self. your rushing too much, you have a lot to do in 5 years. now you just have to get through this first year of h3ll!

i should add this all has to be done in this order.

you can't begin to grieve until you have found out what you need to grieve & what can be compensated for-- so you understand & know what to greive.....until then greiving is just premature.

you can't begin to compensate until your ms is stabilized so you know what you have to compensate for....

you can't begin to stabilize your ms until it is known, until that year of uncertainty is understood by docs. everyones ms is individual, the doc's have to understand your individual ms to know how to stabilize it.

and you can't begin to dream again until you understand your unique, individual ms...until you have stabilized it, compensated for it, grieved for it then you can dream again..but it takes 5 years to get to that point.

[0485c10]

The Dr. should prescribe something for you while on steroids to help you sleep.
It only helps some, but is better than nothing.

Avoid caffeine if you can.
Take advantage of the extra energy (ha ha).

There were times I was up at midnight wallpapering or painting walls.

benadryl works as a otc sleep aid for me and it really helped while i did steroids. eat lots of potassium... raisens, potatoes,pinapples while doing steroid & avoid salt.

[MyGirlsMom]

0485C10,

That list of the MS years is really very good...I think you posted that before because I printed it!

The first time I read that list I sighed relief....I had thought I just couldn't manage and everyone else could and that post really put it MS experience in perspective. In fact, I was just thinking about it the other day...I am in my second year of diagnosis and now I am working out the details of my meds. THANKS and keep sharing that over and over again!