Day 2 of how am I supposed to live
 

Yes, another one bites the dust to MS. I'm 46, sep. for 2 years, 1 - 6
year girl and no other family or friends. This all came out of the
blue for me. I guess I've had symptoms for sometime, but really didn't
pay any attention to the numbness... One 1-31 I started falling
everywhere, on 2-1 it got worse, on 2-21 I stood alone and read the
mri report before going to my 3rd nuro. appointment and being told
that I had a severe case with multiple lesions. Of what I can tell
5 of an uncountable number are in places that control everything
from mood to the entire motor function of my body. I never dreamed
this would happen to me. I don't know how any of you have learned to
live with this. How does anyone live knowing any second they could be
turned into a vegetable? I've read many of your stories but have yet
to find anyone just diagnosed with so many lesions. Too many to
count?? I'm sick of the word multiple. I'm sick of this pity party and
really don't mean to be putting it on you. But, you are all I have;
thank you for being here, and thank you for letting me rant. :hug:

Hi Sheena,
Welcome to NeuroTalk, I'm sure you'll get to know many of the great group here.
Hugs for you and daughter.
:grouphug:

Sheena, I just wanted to welcome you. You'll find tremendous support here.

Too many lesions to count...
 

Hello, Sheena and welcome to NeuroTalk.

I am very sorry you have this disease :hug:

There are no rules for MS - you can have alot of lesions and very little disability or just a few lesions and be more disabled. Lesions do not always tell the story of this disease or how you may or may not feel at any given time.

It's really too soon for your neuro to know your MS is severe. It takes time to see what the disease does or doesn't do.

The most common "type" of MS is relapsing/remitting (RRMS). You can be at your very worst (exacerbation/relapse) wondering if this is it - is this what my life is going to be like. Then over time (possibly months) you start to notice symptoms aren't as bad or your walking a little more/better - remission is happening.

Remission doesn't necessarily mean you are back to your old self. You could still have symptoms and possibly some difficulties but your not as bad as in the begining.

When I was diagnosed (dx'd) and for many years afterward I worried and wondered about worst case senarios. It's been 22 years and my worst fears have never happened. Now, I'm just thankful for what I do have - my husband of 26 years, our children (16 & 18) who were born after my dx and my life.

Hang in there, Sheena and talk to us - we understand.

Hello Shanna, welcome and welcome to the 'rant room'. I'm sorry you had to find us this way but we are a great group of people here. A lot of us have been together for 10 years or more. I will never forget a wonderful woman I met at a MS social gathering who was totally confined to a electric wheel chair. She was the most vibrant woman I have ever met. Have you had any steroids yet? If not, they will partially help, some or a lot, get you over the hump. Good luck and come back.

Hi Sheena!

I was dx'd almost 6 years ago.

This is a great place to come for comfort and understanding.

I'm so sorry it doesn't sound like you have a lot of support. You sound like a 'Do What Needs to be Done' woman.

This disease is very unpredictable. It really takes time to see what your body is going to do.

Welcome to the boards.

:hug:
Kim

Hi Sheena,

One of the very first people I met on the MS boards, several years back, was a wonderful lady who had a 13 yr son who was given a MS dx. He had in excess of 100 lesions, on first count.

He tried various medications, and in the end his mother got him onto an alternative treatment. He is now about 21 yrs old, has finished school, he got into college, and hasn't had any big problems along the way.

I had my first attack in 1991, and was paralyzed. The odds were 66% that I would be permanently disabled in a big way, and even a large chance I would be bedridden from the get-go. Those are the odds they gave me. :mad: I recovered and went another 12 yrs before I even experienced another attack. I recovered from that one too.

Don't let anyone tell you, at this point in the game, that you are not going to be ok. They just can't possibly know that, like Snoopy said.

Cherie

welcome to the club, dont let it freak u out it is a illness that can be worked around, and on here u will find many answers, dont be afraid to ask there are

no silly questions, keep a journal of how things go each day or everyother write down your questions you have for your doc's, and try to keep your

humor and spirit, I mean, sorry if this comes out wrong, but when i have fallen on the ground i always look around to see if there is something i can pick up while i am down there.

one day one step at a time

Welcome to the site Sheena, but before you freak out too much I want you to know that I was diagnosed in 1977.

That's 30 years and six months ago! I worked 4 days a week until 5 months ago in a busy hospital setting...that made it 30 years and one month since diagnosis! I still walk (occassionally with a cane), but only because I've been a bit unsteady on my feet lately.

I was 25 years old when I was diagnosed Sheena, I'm now 56! Don't give up hope, and do not expect the worst. MS is not a death sentence, nor is a life sentence in a wheel chair.

You may not be one of the lucky ones....only time can tell that., but not everybody becomes disabled Sheena. In fact approx one third never become disabled in any way, and I believe those figures are getting better all the time.

Keep thinking positively, and keep in contact with all of us on the site. We're here to support you in whatever way we can.

...sounds familiar...
 

Sheena,
To listen to what you are going through sounds very similar to how I was feeling 2 months ago. I was also diagnosed out of the blue. Many lesions, but I don't think as many as you. But things, symptoms, just seemed to come one after the other. I thought is was all out of the blue, but now, given a few weeks to really think about it... I'm sure this has been around for many years. This last attack that sent me to find a doctor was just more severe. I thought it would never end and that I would progressively keep getting worse. I thought my life was over. Well now, symptoms have eased up and I can think a little more clearly. I understand it better now, since my body is telling me things don't have to always stay bad. I still don't know what to expect in the future, but that seems to be the nature of the beast. So I am just enjoying what I "do" have. I just no longer take anything for granted. I do still get depressed, but I'm a little more over the shell shock. Anyway, not sure if this is of help. But I do know how you are feeling. And you are in my prayers. It is a rough row to hoe, but as others have said, please know you are not alone. We are all here for ya!!! :grouphug:
Best Wishes! :hug:

~a friend

Welcome to Neurotalk. I'm glad you found this site - it's a mental lifesaver! You can also get some reassurance that you are not alone in this - all of us here have been at the point in the road you are now.

I've been dx since 2005 but I'm sure I had MS for years before that - just didn't know it. Looking back I can see times I thought I had a pinched nerve (causing numbness & tingling) or ear infection (causing dizziness).

MS is not a death sentence....far from it. There are disease modifying drugs (DMD's) that you can take that were not available several years ago.

Don't let anyone tell you that just because you were dx later in life that it HAS to be aggressive and progressive. That simply isn't true. I was dx at 45. I've had symptoms that have been severe and lasted months - like the flare I'm in now - it's been going on since October 2007 but it's getting better....however slowly it is getting better.

Just try to relax - the more anxious you get the worse things will seem. I know it's hard to do with the dx coming out of the blue. Having the rug ripped out from underneath you is not fun but this is manageable. Talk to your doctor, hear him or her out and make your own decisions based on what's best for you.

Hope to see you here on the board often - let us know how you're doing.:hug:

I know someone who was diagnosed several years ago that was told her brain looked like "a starry sky". If you saw her today, you would not say "She has MS", you would say "I wonder where she gets all that energy?"

:hug: Welcome. Sorry to hear about the DX, but glad you found us.

Getting this DX out of the blue is never fun. Despite having two family members with this, I was not expecting to have MS too. It floored me when they told me they suspected it.

As you heard, there is no definites with this disease. It hits each of us differently. My mom was Dx'd young and had an aggressive form. My grandmother (dad's mom) had a "mild" form. She had some nasty flares, but always managed to bounce back for the most part. They finally told her it was MS when she was in her early 50s. She retired in her early 60s from her pathology job.

Even mine is a little different. I don't have that many leisons, but they are positioned in not so great areas in my brain and spine. Who knew that only 12 visible leisons could cause such havoc. :rolleyes:

Be kind to yourself as much as you can. Even though it sounds like a cliche, taking it one day at a time is something that we need to do. For me it's been a hard lesson - I'm a stubborn one, LOL. :)

Hi Sheena and welcome to NT! :Wave-Hello:

You came to the right place. Everyone here understands what you're going through right now. :hug:

I was dxd. RRMS in 12/01 at age 33 and I remember my first year being the hardest on me mentally. I don't like surprises or the unpredictable and that describes MS. I hated that there was something in life I couldn't control. I had a lot of anger towards this disease and it took me a while to accept.

Allow yourself some time to get your head around this diagnosis and know that it's not really as bad as all those thoughts going through your mind right now. Above all, keep a positive attitude and a sense of humor and know that we're here for you!

Sheena,

Welcome to NT. You will find that we are a great caring group and are here to support you.

It is a frustrating disease as NO ONE can predict your course of the disease. That is really difficult because that is a question we have all asked at some point. The only predictable thing about MS is that it IS unpredictable.

The number of lesions, to my understanding, does not dictate how debilitating your MS will be. As you read in others posts, there are many who have lots of lesions and live perfectly normal lives. There are some with only a few lesions but those lesions effect their every day activities.

Give it some time and see how it goes. I know that is easier said than done. Someone gave me that advice once and it turned out to be the best advice. You will be OK and we are here to help you along the way.

Wishing you the best.

Welcome. Sorry you are now a member of our 'club' but then again happy to meet you and try to help out.

Firstly, think about it. You could (out of the blue) be dx'd with any number of awful diseases and some of them are hopeless. MS is not.

You've gotten through the first stage (finding out what's wrong) and now you can settle down and deal with it.

There are many courageous and helpful folks here in various stages of MS.

Do you know what your dx is ....RRMS, SPMS, etc....

I have quite a few lesions but they don't appear to be active. Some people have a lot of activity happening and some don't know.

I'm sorry if you are alone in this. That means you must rely on a good doctor and find out who you can turn to in your area (any of our MS buddies near you?).

I live in North Carolina; where are you ? (don't have to give out the town or anything).

Seems to me like our MS pals are always reaching out to help each other.

Good luck.....

Tootsie

Hi, I just want to thank all of you for your support and knowledge. I truly didn't know what to expect when I found you. All of you have been so very kind. Thank you again; I wish each of you all the best in your struggle against this thing that seems to be trying to control us. :hug:Sheena

Just wanted to welcome you to the board. I know there are hundreds of us here and many will be able to answer any questions you have or just be here to help you through struggles, acceptance....and the big thing, hope for the future. Sorry you are going thru this! :hug:

hi sheena,

i'm SO glad you found us. welcome.
did your dr start you on any meds?
getting diagnosed (dx'd) can be a very scary thing. having support and just learning what you can about MS can be very empowering.

check with the NMSS website to learn more. and you can call 1-800-FIGHT MS to get the # of your local MS chapter. they might have some help and/or resources for you.

please keep in touch with us. we're here to help.

Yes, Dr. wants me to start Tysabri. But, I'm now very concerned about some of the things he said. Please view m next post and see what you think. I think I have been lied to. Thanks Sheena

HI Sheena
nice to meet you although i am sorry you have been Dx with MS. As the others have said, it is not the end of the world- the number of lesions does not corrulate with the degree of disability or the likelyhood of progression



I was dx in 2004 and had multiple lesions (too many to count) and was told that it was highly likely that i had had MS for at least a decade! i was already wheelchair dependant due other reasons so the thought of having another condition that was degenerative was difficult to take. Once i got used to the idea though and calmed down, things have not been too bad.



Unfortunately i have been through a tough period recently and have multiple relapses, i have been hospital(12 or 13 admissions) for the bulk of the time since october, i have had 5 lots of IV steroids and several courses of oral steroids. I have now been reclassified as "highly active Relapsing remitting MS" which i have been told progresses about twice as fast as the more usual type. Ty is recommended but i am not a candidate for medical reasons



Even with all this, the one thing i know is that MS is really unpredictable- the relapses could stopp just as quickly as they started and as for the comment about progressing twice as fast- twice as fast as what, there is no standard course for this disease. all you can do is try and stay as informed as possible, take care of your general health and try not to let MS lead your life. I know it is really scarey but it is not likely that you will wake up a vegetable one day, and it is not a fatal disease.



I must admit that i am surprised that your neuro is Ty at this stage simply because he does not know how aggressive your MS is and he will not know that unitl you have another relapse- at the moment there is no way of knowing how fast you have developed new lesions or how fast or slow you may develp new ones. I am not trying to make light of your situation but the other thing that comes to mind is that since the dx came as such a surprise, it sounds like any attacks you may have had in the past have had minimal impact to your day to day life- to me that sounds positive!!

Hi Sheena-

:hug: Just wanted to say Hello and welcome to the board :hug:

Glad you found us; this is a wonderfully supportive community. If you want, post away with your concerns, you will be sure to find some peace of mind in some form or another! Keep us posted :hug:

hope this site gives you some comfort
 

i am sorry to hear about your devastating situation. i just saw my mri and got the neuro kinda sorta diagnosis about 12 days ago and there are still so many WHY questions for me....hopefully this site will help you get through this difficult time--i know it is helping me! takecare, Mary:hug: