What can I expect?

[Pinman]

I was feeling off balance, and knew something was wrong. So I went to the doctors, he set me up with a MRI. The outcome to date is there was some lesions, and he was more than 50% sure that I have the begining stages of MS. He advised me that it was not life threating, but life changing. I have an appointment with a nero. specialist in about 12 days. I still am walking off balance. What i'd like to know is what can I expect as time goes on? Please send info. Thanks.

[Heather3418]

Don't listen to Granny...Johnny is only 6' tall.  He admitted in an earlier post that he was lying when he said that he was 6'3"......LOL

I agree with everyone that has responded to your post.  I also agree that there is 'power in knowledge'...so learn all that you can about MS.  Sure some of it will not pertain to you and your situation and indeed, some of it may actually frighten you.  But as Carol says, MS is NOT a death sentence.  There ARE some great treatments available to help prevent replapses.

Your doctor says he is "50%" sure that you have the beginning stages of MS.  Well, if that is true, than NOW is the best time to get started on one of the drugs designed to keep the MS from getting any worse.  Time is valuable.  You need to talk to your Neuro about all of this.  It's very important that you try to stop MS in it's tracks with all the available options, open to you.

I have been diagnosed with MS for 12 years now.  Except for chronic pain, the MS has NOT progressed.  There are even days that I forget that I have MS.  Those kinds of days will happen to you soon enough.

You have to grieve...this is a situation where greiving is appropriate.  It's a life changing event.  MS can take away the things you once took for granted, then again, MS can also stay "quiet" and not cause any further relapses.  Let's hope that is what will be true in your case.

Most importantly "Pinman," you are NOT ALONE.  We are all with you on this.  Lean on us....some of us are newbie's to this disease, some of us have been dealing with MS for a long time.  Having MS has made me appreciate the little things in life and I no longer sweat the "small stuff."  Live your life, don't let MS live it for you.

Keep us posted.  Best Wishes, Heather

[grannyhotwheels]

Welcome to our family.  I think that you will find this group of wonderful people is just what you need.  Just like the rest of us you will have days that you are down and need someone that understands what your going through.  This is the place for that.  There is so much love and compassion here, trust me you'll see.

I pray that if it is MS that you have (and it does sound like it) you need to do the things that Johnny suggested.  Not only is he an adorable 6'3 hunk of a man he is smart too.lol  Seriously now, get educated and know everything the doctors do and say.  Also, make sure you know something about everything they may prescribe to you.  

Be your own advocate, because if you don't do it no one else will.  Be sure and keep a time line of everything that concerns you medically.  It will come in very handy.  Most of all don't be afraid,  MS is not a death threat.  Always remember that you have MS it doesn't have you.

I'll be praying,
Carol

[Pinman]

Thanks for the useful info. I try to be positive, and yet find myself confused. I like the idea of keeping a daily log, until I know what I have. Thanks both, will keep u updated

[sllowe]

Hi Pinman,

Welcome! It is very difficult when your walking is off.  Does it feel like you can't walk a straight line? That you have to keep correcting yourself.  Also, does it feel as if it is related to your eyes and is there any other things "off" as well? For instance, your reaction time, as if your head and body are not in sync? I'm asking this because you will have to describe the symptoms to the new Dr., and you will have to do so by provinding more information.  

In the meantime, try to keep a list of things that are going on that are not ordinary for you. It will be helpful for the Neuro to know these things.

I hope you feel much better soon, and wish you well with your Dr.

SL

[Johnny Utah]

  MS is a disease that effects everyone differently and to a different degree. Some people, in fact a gentleman I work with has MS, was diagnosed 15 years ago, went on weekly injections, stopped them after two months and has not had a flare up since. Some people have one flare up, some have many. About 40% develop cognitive issues with memory and speech, most are minor and seldom do they present in such a way to be disabling.

  Fatigue is one of the major issues with MS. It is not the same type fatigue that people get because they have been to active, or didn't get enough sleep. MS fatigue may be tied to what they call the ascending arousal system. It really means that your body may simply not get the right chemical trigger to get you motivated. It involves neurotransmitters such as norepinephrine, serotonin, dopamine, histamine, and acetylcholine.

  There are common areas of the brain that MS effects and one of them is an area that these neurotransmitters pass through. MS fatigue is difficult to treat.

  I would take a different approach and say get educated. You have not been diagnosed and that might take months or years even. In the mean time you may or may not continue to have symptoms. Start keeping a time line of when you have symptoms, month/year. It will help you and your doctor track your condition and provide clues to the frequency of your symptoms. We don't always see a doctor because we have some pain in our arm. But when the pain becomes to much or comes and goes frequently you may go to the doctor and having a time line is helpful.

  Be your own advocate. If you don't feel well follow up and request more tests be done. I'm off to work or I would have gone on for a while. Chat later.

  Johnny

[Pinman]

Thank You.

[que03]

What a loaded question!!  Everyone is different.  My best advice, deny that anything is going to happen.  Fight it tooth and nail!  Exercise like it is a job so that you will not lose any use of your body unless something devastating happens.  Take the injectables to help you be a fighter and stay hard nosed that you will not be defeated.  Don't read too much or you may get down. A lot of it does not aplly to most.  If you have a question, ask your neuro.  You probably will get you balance back.  Make sure you get lots of rest and don't overdo.  If it is MS with the interferon drugs you can ward off damage pretty well most of the time.  Good Luck!
Que