MRIs and Spinal Tap

[Dixie497]

We have a 20 year old son who complained of numbness, tingling, tightness in his chest, etc.  We took him to a neurologist who immediately sent us to a hospital emergency room.  An MRI was done of his spinal column and it showed an abnormality.  The MRI of his brain showed four lesions.  The results of the spinal fluid have not come through yet.  He is on a 5 day steroid treatment.  The physician at the hospital did not give us a diagnosis of  m.s., but myelitis.  The neurologist said to me that it is MS and so did our regular doctor.  Why are we getting conflicting diagnoses? My husband refuses to believe that it is m.s. and thinks that it is just myelitis and that there is a 50% chance of no reoccurrence, but how does that explain the lesions on our son's brain? Obviously, we are sick with worry as all of this started just a few days ago.  Will the fluid explain more?  Will we only know for sure if it's m.s. if, when he finishes this episode, it reoccurs??  Any guidance would be deeply appreciated. Dixie

[LoveMyBostons]

I'm sorry you have to go through this. I can tell you though that IT WILL BE OKAY no matter what. I'm only 28 and am recently diagnosed. I give myself daily injections and it's becoming just a part of who I am. I'm still able to work full-time and not much in my life has changed. I just get tired faster than everyone around me.

My mom had a rough time with my diagnosis and cried to people on the phone about it, but honestly I am okay. I found it annoying, kind of like she was making this all about her. That is, until an older friend at work told me to ease up on my mom. She said it's hard as a mom to find out that something is wrong with your child that you cannot fix. I'm trying to be better about not getting annoyed when I find out my mom has told everyone I know about my diagnosis.

Please just do what you can to support your son as he learns what if anything is wrong with him. Let him talk about it and share his worries and fears. His strength may surprise you.

[Dixie497]

Today, we received a preliminary diagnosis of our son's spinal fluid.  There was a faint "band" and they want to repeat the lab work.  My question, should there be a "band" at all?
What does this mean all together: brain lesions, physical symptoms, spinal column issue, and "band"?  As Quix, MD stated, how can we be sure it isn't mimicking something else?  And, what about prophylactic treatment?  Does this prevent future attacks?  Are there any side effects with this treatment?  We still are having a difficult time digesting that this is indeed MS.  I wake up crying and go to sleep crying (but hardly sleep), but my suffering isn't what matters.  We are all broken.

[Quixotic1]

Hi, and another welcome to the forum!  Early in the course of this kind of workup it is not unusual to hear conflicting things.  From a medical standpoint everyone is right, sort of.  Because of the lesions in his spine he does have myelitis.  Myelitis is just the medical word for disease of the spinal cord.  If the doctor specified Transverse Myelitis, he is still not wrong, but if he said that was the only diagnosis, he was being incomplete.

With 4 lesions in the brain, no one can now say that this is a simple Tranverse Myelitis, because the disease (whatever it is) is not limited to the spinal cord.  Now, is this MS?  The diagnosis of MS depends on the finding of attacks of symptoms that are seen with demyelination, a neurologic exam that shows abnormalities, and - very important - the ruling out of any better explanation for the problems.  This means ruling out the MS Mimics and is usually done via a large set of blood tests.

Lulu is correct.  With just the one attack, there is not enough information yet to make a definite diagnosis of MS.  They would need to have evidence that the central nervous system has been attacked more than once spaced at least 30 days apart.  So the most they would be able to say is that he has a Clinically Isolated Syndrome - of myelitis and be about 90% sure that it will become full-blown MS.  With a myelitis syndrome they would likely recommend beginning one of the meds for MS.  Myelitis is a common thing for people to have when they first present with MS.

Now.....take a deep breath.....MS is not a death sentence.  Nor is it the end of all he has envisioned for his life.  Many people with MS live many decades with only the occasional bout of symptoms and never need help walking between attacks - or even ever.  The expected life span for most people being diagnosed now is normal.  This disease is portrayed far more ominously by the media and is erroneously seen by the public to be the same as paralysis, needing a wheelchair and an early death.  That is because they are not aware of the thousands upon thousands of people around them with MS who work at their families and careers and who appear quite normal with the exception of the occasional relapse.

Please, keep the good news in mind as we await the results of the spinal tap and the results of the ruling out of the mimics.  Also, know that a negative spinal tap does NOT rule out MS.  The tap is useful when it is positive for the things seen in MS.

I do hope you will stay with us and encourage your son to talk to us.  This is not a time of grief.  We are just facing an unknown.  We have many members here in their 20's.  Some are diagnosed and some are not.

Quix, MD

[Lulu54]

Dear Dixie,
As one mom to another, I can say I appreciate your despair right now.  The image of multiple sclerosis that most people have is almost always a totally different one than reality.  MS treatment has changed so much over the past 15 years or so.  The vast majority of MS patients - I want to say 85% - remain ambulatory and live a normal life span.  

While you are waiting for your next appt. be sure and spend some time learning more about MS and Myelitis.  We have great health pages here - yellow icon, upper right side of this page - that contain a wealth of information.  Perhaps something there will be of use to you and your husband, as well as your son.

The diagnosis path for both of these involve a lot of tests to eliminate other diseases - and usually requires a lot of patience.  There are a lot of other things that have to be checked.  I sincerely hope for all of you that you don't have to wait long for concrete answers.

In the meantime, please try to not go to the worst case scenario..  

Please come back and ask all the questions you want - someone is always around here to try to help out.

good luck and stay in touch.

my best,
Lulu

[Zacksmomi]

Hi Dixie,
Welcome to the MS forum.  I am very sorry to hear about your son.  I know it is very scary.
I wish I could tell you that an official diagnosis will be fast.  Mine was considered very fast and I did not get the official diagnosis until 2 months after my attack.  

There are many factors that determine a diagnosis now, and you may get the right answers from this first (and hopefully only) episode.

You son seems to be in the right hands all around. He is getting the right treatment and many people make a full recovery from his type of symptoms.  
He just needs you to be patient for him and learn what you can.

Don't give up on his future even if it is MS.  A lot has changed about this disease in recent history and many people are living very normal lives.  There are mountain climbers and marathon runners out there with MS.  

Please keep us posted.

Wishing you the best
D

[Dixie497]

Thank you so much for your kind words.  My husband and I are going to meet with the neurologist (who did the initial diagnosis) and get some more feedback.  We also have a meeting with a top-notch research specialist who is world-renowned on Wed.  We will spend our every last dollar to help our son, but we feel we are being strung along and probably, should wait to get the spinal tap results, but we are on pins and needles and we are completely broken-up by all of this.  Our son had so many plans for the next few years and the rug has been pulled from under him.  He is the sweetest most gentle soul.  
Please, doctors, readers help us.  Thank you.

[HVAC]

First off Dixie I know you are in a very scary place right now with your son. It sounds like you have a very good neurologist.

I am no Doctor and only speak as one who has gone through the diagnosis process. MS is not easy to diagnose. It is not just tests results.

It takes a good Doctor to put together test results, look at neurological abnormalities, and rule out other illnesses. No Doctor even if it is MS can predict what will happen since each case is different.

I had Doctors thinking I had MS back in 2007 and I was diagnosed after a spinal tap in April of this year with MS. I have never had an attack which needed medical attention, however I slowly lose the use of my left side, have more cognitive issues and have more odd symptoms.

Good luck to you, your son, and your family.

Alex