MS outcome

[Ofelin]

Greetings,

I am a 21 year old male and i had my Clinically Isolated Syndrome on my birthday ~ 2 months ago (The irony). i had a sensory symptom. My left leg and hand went numb with a burning sensation. I also had minor weakness in left hand/leg but especially the leg.

I did a brain and spinal cord MRI and was rushed to hospital for treatment and further tests. I took cortisol for 5 days while waiting for the results to come back.

Then the results came back : demyelinating disease.

My neurologist told me that i had 5 lesions. 4 on my brain ( 2 of them were active) and one on my neck that was causing my symptoms. He said that he is going to put me on meds right away and treat it as MS, however he cant define it as MS unless there 9 lesions or more.

He assured me that i wont have any disability and i will lead a normal life as RRMS can be managed with the right treatment and most of all prevent the transistion to the second "phase" of the disease which is untreateable.

He also said that he was really impressed about how fast my leg and feet improved ( Strength wise)

A patient must trust his Doc but i did my own research over the internet and i am really freaked out.
All i keep reading is how unpredictable and devastating this disease can be. This makes me believe that my Neurologist is giving me false hope.

Right now i am "OK". Physically at least. My leg recovered 100% ( No numbness or strength problems as far as i can tell) My fingers are still improving. I am just getting back pain that come and go. I never had any back pain and that worries me.

Emotionally i am a wreck. I feel like my world has been shattered.

I would love to hear your thoughts on this matter cause i am starting to lose it.

PS: I am on Rebif currently. Sorry for my awful English

[Ofelin]

Thanks for taking the time to answer. I really appreciate it.

You guys are truly amazing and inspirational. I will keep you updated :)

Wishing all the best ^.^

[HVAC]

One thing I have learned is people are not statistics. With MS each case is different and individual. The hardest part is learning to live with uncertainty. I have had MS since I was two years old. I was not diagnosed with MS until I was in my 40's. I have Primary Progressive MS and all I have read is kinda bad. My MS has not really progressed much since my childhood. I am doing so well they told me I do not have to see the neurologist for two years.

Most people with MS do not have to use wheelchairs. They have learned more a developed more drugs since I was diagnosed in 2009.

The most important thing I have learned is not to freak out about the unknown. I also have stage 4 Cancer. I live with the knowledge I could die at any time. My Cancer is way worse than my MS. I have learned to enjoy life. None of us knows what may happen to us tomorrow. Other people just go about their lives and don't think about it.

Having a good relationship with your health care team is key. Then I let them do the worrying. That is why I pay them the big bucks.

Stuff you read on the internet can scare you. When I was first diagnosed I looked at all the bad things that could happen with MS and waited for them to happen to me. After awhile things happened but not all the symptoms. Then I learned to adjust to whatever symptoms I was having.

You have inflammation when It comes and goes so do symptoms. If symptoms are bad they can give you steroids. When inflammation goes away so can symptoms. Some symptoms stay and you learned to adjust to them.

I am lucky I have had MS since the age of two. I thought my MS Symptoms were normal because that is all I have ever known. I have always had double vision. I learned to drive a car, play ball, and climb ladders with double vision.

I like bucket lists. Since I was diagnosed I have gone up in a hot air balloon, started riding horse again, gone on great vacations to the ocean and the mountains. We do not have a lot of money but people offer us their places and let me ride their horses. A biplane ride is on the list. You have to have fun. A sense of humor helps.

I have lots of friends and my husband and have grown closer. I would not wish illness on anyone. In my case it has made life more challenging but life is really good.

Sounds like you have a good doctor who is doing all the right things.

Alex

[kwarendorf]

Welcome Ofelin - Your English is just fine :-)

THe truth lies somewhere in between your doctor's "No big deal" view and the horror stories available online. The truth starts with we all have our very own version of MS. If you ask 100 people to describe their MS you will hear 100 different stories.

There are large areas of overlap, but combinations of lesion count and location, symtoms, response to treatments and progression are unique to each of us.

It's important to differentiate between treating symptoms and treating MS. You symptoms were treated with, what I'm assuming was IV, cortisol. The steroids are powerful anti inflammatories. It's the inflammation that causes the symtoms, and it's MS that causes the inflammation. By reducing the inflammation you can reduce the symptom. In many cases you will see complete recovery and in others partial recovery. It's good to hear you're on your way to the complete version.

The diesease modifying drug (DMD) in your case is Rebif. The goal of the DMD is to prevent further attacks. If you can prevent the attacks you don't need to worry about the inflammation. None of the available treatments are 100% effective. There is a cance you may not react well to Rebif. It may cause unacceptable side effects, or it may not be effective for you. No worries, there are 3-4 other first line treatments for you to try.

ABout progression, there are two types of progressive MS; primary progressive MS and secondary progressive MS. Primary progressive is much more sever and much more rare. It is characterized by a steady decline in function. There are no relapses and there are no available treatments. MS never moves from relapsing remitting to primary progressive. It seems that you have relapsing/remitting MS so you don't have to worry about getting primary progressive.

Secondary progressive MS is the progression of relapsing/remitting MS. About 85% of people diagnosed with RRMS will move to SPMS at some point. But that's not as bad as it sounds. I was diagnosed 3 years ago and my initial diagnosis was SPMS. By the time I needed to find out what was wrong, I'd already had MS for 20 years but didn't klnow it!

So you can move to SPMS and still be fine. I am. I get up every day and go to work. I travel, ride my bike and lead a pretty normal life. There are treatments that can work to slow down SPMS n spite of what you read. I have been on two meds. I have had no relapses since the one that lead to my diagnosis and there has been only marginal worsening of my symptoms.

You caught it early and have a doc that is engaged. The doc part is key. As you said it is important to trust your doc. It is also important to recognize that this MS thing is going to be around for the foreseeable future. SO your relationship with your doc can be like a marriage.

DOn't freak. Take lots of deep breaths. As us lots of questions. We've all been where you are :-)

Kyle