please someone answer! new to MS

[whatayear]

Hi I am 26 and they think I have MS I have a MRI christmas eve! my question is what kind of life am I going to have with MS? I have a 4 year old and a 1 year old and while eager to know whats wrong, I dont want to know...does that make sense! Is this going to kill me? Am I going to be able to play with my kids or finish college? DO the meds help slow down the progression if they catch it early enough should you be able to slow it down for a long time? Will I be in a wheel chair within 10 years? I know this may be different for everyone but what are the general rules....does life go on with MS? is there any where to get suporrt? Im so scared it is overwhelming! Please someone who lives with MS let me know what Im in for. Im too scared to read about MS becuase I think you get most of the bad Id rather hear from people lving with this. I already have a secondary issue with IST which is insapropriate sinus tachycardia where I run a very high heart rate which has to do with the automic nervous system. which makes sense since MS effects this but no balance issues at this time. please anyone I am desperate! thank you

[whatayear]

Hi Heather thank you for your kind words of support from you and everyone that has posted putting me mind as ease.

I dont know what I would have done the last couple of days without this website! It has been a godsent and has kept me sane! LOL yes please keep me in your prayers and I will do the same for all of you.

[Heather3418]

I certainly agree with the information through the responses, you have recevied so far.  You certainly have alot of emotional issues that are going to need your attention.  You need to talk over your feelings with friends, family, doctor's or people on this forum that have been in your shoes.  You do not sound like a person that keeps everything inside, so you are already one step ahead of the game.  You are smart, because you want to have all the information that you can get.  There is power in knowledge.  

Some of the information you read about MS will frighten you.  This is a normal response.  That's where you will benefit by talking with others, that share what you are going through. No one seems to understand more about what you are going through then people that have actually been there.

This is a great place to be to gain the information and compassion, that you need right now.  I am so glad that you decided to join us.  We are here to help in whatever way we can.   If we can't help, we can direct you to someone who can.  You never walk alone, when you walk among friends.  Hopefully you will soon regard as your friends and lean on us.  

May I ask you a favor?  When you post, can you separate your sentences into paragraphs.  So many of us have trouble reading due to eyesight problems and breaking up your thoughts into paragraphs helps us all.  Thank you dear.  

We are with you.  And will remain with you, as long as you need us.  This forum has been a god-send for many.  I am an old timer when it comes to MS, but I still find that I need the support of others that understand what I go through.  MedHelp is a life-saver to many, by the forums they offer us to talk about what troubles us.  We thank MedHelp for their obvious forums.

Again, we are so glad that you joined us.  You are in good hands, when you are in the hands of this forums, "Angels with Invisible Wings."  The people here are my prized group of friends.  I hope that you will find the same to be true.

Take care and try not to worry so much about the future.  All the worrying in the world, will not change one minute of your life.  What will be, will be.  If something comes up that you don't understand.  So when you have questions and concerns please consider us some of your closest friends.  

Take care and I hope you don't mind if I say prayers for your peace and comfort.

Hang in there....we will work through this together.

heather  

[whatayear]

soo will I have times where my body hurts like this and times where it doesnt after they get me on the right meds? Im optimistic I have Hope I believe things will get better I would just like to know when!!!! LOL even cooking earlier my arms got very tierd! and then washing my hair my arm felt like it didnt want to work and the right side of my arm was numb and then slowly went away I just feel exahusted! yes she is a evil step mother she is the most neg person I know shed like me to die so my dad wouldnt have another perosn to give attention to!!!! OK now what is the best way to stay healthy with MS how should I live my life with this so that I prevent infections and such that could be a problem is there a book that tells you the best way to take care of yourself with MS? I cant even believe Im writing about MS Im still in shock over this. I assume what im having is a flair up....will meds help this go away what meds should I start with I read something about your body rejecting the infeuron (sp?) is avelox pretty good? what else will they probably start me on? so actually with meds I should feel better then I have felt in a long time, could I have had this since I was 19 and just not known? I started feeling not right around that time but wasnt till the birth of my second child that it has come into full force. also what about the headaches? headaches are new for me never really had them before latley now I seem to get several a week. IF the IST is releated would the meds for MS help calm my heart aswell maybe? thank you everyone!!! I have no support from family or friends I feel like Im flaping in the wind I have foudn this forum very comforting thank you for that you have no idea how you all have helped me in this time where I didnt know what to do!!!!

[Quixotic1]

Hey, your evil step mother has all the wrong ideas.  She is probably confusing ALS - Amyotrophic  Lateral Sclerosis (Lou Gehrig's Disease) with MS.  That's the most common confusion.

MS USED to drastically shorten the life.  Early in the last century it cut the lifespan in half.  By the 1970's it still cut the lifespan by about 15 to 20 years, mostly from complications life infections.  Currently the figure stands at about 7 years shorter life expectancy, but remember that today's figures are mostly about people who DID NOT have access to the Disease Modifying Drugs.  Most people who study such things believe the MSer's life expectancy will approach that of the general population with the next decade or so.  Okay.  Now you have heard the facts!  Now, Drop this whole worry about croaking early,  'kay?

The extreme physical and mental fatigue/exhaustion is considered by many to be the worst of the MS symptoms.  About 90% will have that fatigue at some point in their illness, but as many as 78% report some form of worse than normal fatigue on an ongoing basis.  There are a couple good meds which help with the fatigue.  My neuro put me on one before he really made the official diagnosis.  I take Provigil.  Another one commonly used is called Amantidine.  Before I was diagnosed I slept 12 to 16 hours a day.

If this is MS the muscles are not only often weak or fatigued, but they may also have spasticity which causes them to be in a state of contraction all the time.  This can cause mild to severe muscle aching.  Also, the signals from damaged nerves may be telling you that the muscles hurt, even if nothing is wrong with the muscles themselves.

About your other questions.  You had the double whammy as far as "triggers" for the onset of MS.  MS is felt to have a series of triggers - not causes.  They do not know the exact causes of it, but it will likely be a combination of genetics, ethnicity, where you spent your early years, what infections you have had, possibly environmental toxins, and a few more.  The disease has it's start typically many months to years before the first symptoms.  The one day the symptoms appear.  One of the commonest times for the disease to first appear or to have a relapse is in the months after childbirth.  

During pregnancy the immune system is moderately suppressed so that the mother does not "reject" the baby - half of whose DNA is different (from the father).  After delivery the immune system bounces back into full strength and this renewed activity often sees the beginning or worsening of MS.  In with who have MS already, the symptoms are usually markedly better or non-existent.

Another trigger for MS is anything that strongly stimulates the immune system to go into action.  The most common of these things is ---  an infection!  So onset or relapse in the weeks following an infection - even a cold or the flu is very common.

You had both these things.  So yes, I suspect that the delivery and following infection were the triggers that made the already present, but silent, MS show up.  Does that make sense?

The other question is about the episodes of tachycardia.  This could be a part of MS, and it would involve inflammation of the nerves of the Autonomic Nervous System.  This is known to happen, but the tachycardia could be a different problem, too.  I have no way of knowing.  Since it started at the same time the other symptoms did, it likely is a part of MS (if that is what you have).

If you go to the National MS Society webpage, they have brochures you can print out and give to people to inform them about MS.  What your step mother told you was thoughtless, at best, and seems very cruel to me.  Is this the way she is?   Delighting in telling people horror stories to scare them.  If so, avoid her as much as you can.  People like that will suck the hope and life out of you.  IMO.

Steeldrum - Hi, have we heard from you before?  Your name sounds familiar, but since I developed TB (teflon brain) I can't remember anything.  I appreciate you speaking up here and I am also glad you find us a good source of information.  Do you have a diagnosis yet?  I agree, my fatigue carries with it an irritability that I never used to have.  I was always pretty laid back and calm about stuff.

Stay with us!

Quix

[steeldrum8]

Don't panic. I'm going through the same thing you are. My kids are 7,5,3 and I have been having problems since March. It's been really crazy. After all the research, I know the MS isn't a death sentence and if someone tells you it is tell them to go away!!!. I have been keeping up with swimming and taekwondo and adjusting things as I need to. I feel tired all the time and frustrated and annoyed and all the other things that people go through. I come on here and read and try to relax. There always seems to be good advice and everyone tries to be upbeat. Good luck.

[whatayear]

Please can someone tell me what is causeing my body to hurt all over my whole body feels like I have been working out and running marathons!!! I just want to go to sleep is this considered a flair up? Why does your body ache with MS will the meds help with that!!!!! My step mother earlier told me MS was a death sentence! what the heck does that mean?????? Im so scared now AGIAN! she said Id be dead in 5 years thats not true from what I have read and been told!

[sllowe]

Hi Whatayear!

Whatayear is right! So young, and you have had to contend w/so much already.  I'm thinking a history like this, pre-qualifies you as a survivor, and you are good and prepped to receive your dx, whatever it may be.  You sound strong to me from the words you've provided, with a good attitude.  

Keep your goals in sight, we'll be here for you.  I'm sorry for what you are going through, but I'm glad you've found our place here.

Welcome to the forum, and best wishes to you with your next steps.  Hang in there, and keep us posted!

Have a wonderful holiday, and be well,
SL

[whatayear]

thank you so much! I feel alot better after readying this sometime all you need is someone who has the illness to let you know that YES life will go on. Im pretty sure MS is what I have just need the MRI to confirm there is also the feeling atleast how I feel will have a name and that is also a very comforting feeling becuase atleast then there are meds to help! I am optimistic and feel hopful for the years to come with my family no matter how hard they may be at times as long as Im here thats all that counts! thank you agian im glad I found this forum ! also since you are a physician maybe you can answer this. I found out that I had gallstones and was pregnant same day was very ill with room spining nausea for 4 months util they took out my gallbladder during the 4th month of pregnancy. I lived on beef broth and gatoriade. then 2 weeks after my pregnacy developed a sever uterine infection that went undiagnoised for over 2 weeks becuase no one thought to check me the 16 times I was seen by a docotor they kept sending me home telling me it was the flu! then I developed a blodd staph infection while in after the D&C then developed severe gastritis and chronic BV that until I found probiotics did not go away and actually got worse after 34 straight days of falygl!!!! horrible stuff but after 5 days on good probiotics got under control well then the heart rate issue started along with all these other wierd symptoms that is most likely MS....could there be a connection between MS and my high heart rate??? and could it have been caused by all the other infections and child birth? My mom told me earlier that she knows a woman who has MS that developed it right after the birth of her twins. what are your thoughts on this? thank you!!!!

[Quixotic1]

Oh my, you have been having a year!  First off, MS is NOT a death sentence!  The majority of people live relatively normal lives, most continue working or doing what they do for many years.  75% will not be permanently in a wheelchair at 20 years after diagnosis, though they may pass through periods of needing that assistance, or a cane or walker.

MS is different for everyone.  I can't emphasize that enough.  The most common form is called Relapsing Remitting and appoximately 80% of people will have that form.  Initially it appears as rather sudden "attacks" or "relapses" of symptoms which last from days to weeks and sometimes months, then resolve.  The attack resolve either entirely or mostly, leaving you to continue normally.  Some people have some symptoms throughout, especially like fatigue or heat intolerance.

Statistically the Disease Modifying Meds do both lower the relapse rate (increase the time between relapses) and the Interferon beta-1a drugs (Avonex, Rebif) have been shown to slow the accumulation of disability.  The meds are changing the very face of MS as we post!  And the meds on the horizon promise better and more targeted action.

Yes, hun, Life certainly does go on, but you have to plan a little "give" and flexibility into it.  While no one can tell you what your experience will be like, your first few years of the disease is typically a good indicator of what the next ten years will be like - and that's without treatment.  You have 2 factors which (again statistically) indicate that you will likely have a milder course.  You are young and you are female.  If also, you presented with Optic Neuritis and sensory symptoms, those "tend " to go along with a gentler course.

I want to welcome you to the forum.  I usually do this in the first line, but the reassurance needed to come first.  We are a great group here of people with MS - some for a long time (close to 30 years and not in a wheelchair) - to diagnosed just this week.  Many are your age.  I am a retired physician with MS, but was not a neurologist.  I am here unofficially, but try to answer some of the medical and technical questions.  We also have a large group of undiagnosed people who are going through what you may be just ending.

So, for now, don't read anything impersonal on the net.  Ask your questions and people will be by to share their experiences.  There is LOTS of life after diagnosis.  Your fears are unavoidable, but stay with us and we will help you through each stage.  We discuss everything here, openly and with a lot of humor.

But, it sounds like they haven't even made the diagnosis.  What a tough timing to be just getting your MRI on the 24th.  But, if we can allay some of the terror, let us.  MS is nothing like ALS.  It is not a guaranteed and steady decline to the end.  It changes you life, but will not take it from you unless you let it. Your babies will have you.

My friends will be by in the morning to add their thoughts.  BE well, all will be okay!

Quix, MD