Beginner's Guide to MS: What is a Lesion?

Hello All,

See if I can explain everything in a short story.  At the age of 14 I was diagnosed with Transverse Myelitis.  I was paralyzed from my chest down.  Luckily I was able to walk again with residual effect.  I am now 51.  I have been having cognitive issues since my heart attack in 1996.  For many years I have been told it is only in my mind (no pun intended).  In 2007, I had a neuropysch done, which they found a cognitive disorder with disruption in the frontal & temporal lobes bilaterally and the parietal lobes greater on the right side.

In December 2008, I decided to go to a new neurologist to talk about Provigil for my extreme fatigue.  He took my medical history and did a neuro exam.  After the exam we sat down and he told me he believes that in 1971 at the age of 14, I had my first episode of MS and it was in remission (since our meeting I found 2 cases that patients with MS had Vasospasm type heart attacks, which is the kind of heart attack I had).

The neuro believes that somewhere in the past I started having relapses and having more problems.  He has put me on Baclofen for the spasticity and provigil for the fatigue. 

The results of my tests are:  T-spine and brain MRI's are normal, Audio Evoked Response was normal, NMO IgG was negative (for Neuromyelitis Optica, NMO), the Visual Evoked Response shows a lesion on the left optic nerve.

He said because I had normal MRI's he is going to hold off on any medications (I assume that is the ABCR drugs).  He did state he was classifying it as NMO, but that was before the NMO IgG blood test results (which state if it is negative there is only a 30% chance you have it or you have MS).

I have been dealing with this for years.  When he told me I had MS I started doing my research and it was like reading my own story.  Any suggestions?

Thanks for listening,

Tim

Tim,

You have a fascinating story.  So glad that you regained the ability to walk after TM.  Looking backwards, can you identify any possible relapses, no matter how minor?  Or was the heart attack at age 38 the first event which seems to fit into a picture of MS?

Sounds like you've had the standard testing conducted for MS, except maybe the lumbar puncture.  But....did you get a C-spine MRI, too? 

You don't mention the C-spine which is certainly a location for lesions to be found.  In fact, I was not diagnosed by brain lesions but by cervical spine lesions - and that was more than five years after I had gone temporarily blind in one eye from optic neuritis.

It's very good to hear that your neurologist is moving forward with some symptomatic treatment, ie. baclofen and provigil.  I hope that they both help tremendously.

I have read that the first 5 years of MS can be used as a rough guide to what someone's course of MS progression will take.  I don't think that it's a scientific study but just an observation.  If indeed you had your first MS relapse at age 14 and nothing major until age 38, then perhaps your neurologist is being very conservative in the treatment approach. 

I'd ask him the questions - Do you believe that my vasospasm heart attack could have been an MS relapse?  Would that be enough to say this is MS and not NMO (aka Devic's)?  What would be your recommendation on disease-modifying treatments if you do diagnose this as MS?  Why is 'that' your suggested approach?  What are your recommendations to address the cognitive deficiencies?  What can I do to help myself?

By the way, Tim, unfortunately lots of folks are told that their problems are psychosomatic (all in the head...lol) before finding a diagnosis.  The big difference here is that you had already been diagnosed with a demyelinating event back when you were age 14.

One last thing.  Other members of the community here will not likely see this comment unless they just happen upon this post.  To gather more input, you might want to post your story into a Sharepost where more folks will certainly see it and maybe respond.

I wish you well and hope that you will come back and tell us how this all works out.  I'm really curious now to know the recommendations which your neurologist has to give.

Thanks,

Lisa

Hi Lisa,

Thank you for responding so quickly.  I am not sure how to repost this in the SharePost portion of this website.  This was my first time here.

I am guessing you are asking if I had any relapses prior to my heart attack in 1996.  Let me say after 1996 there have been many.  Even when I get a cold or flu I am in bed for a few days to a week.  Actually, my heart attack was while I had the stomach flu.  I have ended up in the hospital about 8 times with chest pains over the last 12 years.  Now I am wondering if it was a kind of relapse, but they were just focusing on my chest. 

I also has a discectomy and spinal fusion at L5-S1 in 2005.  So doctors have been focusing on other issues over the last decade.  Prior to 1996 everything is fuzy.  I know I had problems and ended up missing work and being in bed for days or a week, but never getting a correct diagnosis of what was happening.  Was there anything major from 1971 to 1996.  Nothing like the last 13 years where the most frustrating is the cognitive issues and memory loss.

I have always had the bowel and bladder issues since I had Transverse Myelitis.  I also have Acid Reflex.  I had a sleep study done in 2006 and they found Sleep Apnea, REM Sleep Disorder, Restless Leg Syndrome, and in 2002 I was diagnosed with Raynaud's Phenomenon.

Thanks for your help,

Tim

Tim,

How you describe feeling with a cold or the flu sounds familiar to someone with MS.  When the body is busy fighting an infection and develops a raised body temperature, symptoms from demyelination can become worse.  It's commonly called a pseudo-exacerbation, meaning it feels and behaves just like a relapse, but resolves once the body cools off.

I can hear the revelation and frustration in your voice.  I hope that answers come with your next neurologist's appointment.  Be sure to tell him all of this and his opinion on starting a disease-modifying treatment may change.  They are not really supposed to help with symptoms, but some people do report feeling better after starting one.

To create a Sharepost, look towards the top of this page, just above the title of this post.  In the Blue box, it says Connect.  The first choice in the dropdown menu is Create a Sharepost.  Here is where you can put your story and information.

At the bottom of the page, you will then be given the opportunity to Register.  There are tools available in your profile where you can 'subscribe' to others' shareposts, send/receive messages, etc.  All good things.

Oh, and, I'm so glad that you jumped in and participated during your very first visit on site.  I had received an email that you left a comment on my post, and I happened to be on the computer.  So, you're very welcome!!

When is a lesion something to worry about? I was recently told that I have active lesions, but they are normal in size and number for my age and not in areas where MS associated lesions are usually found. Still, they are very bright and active. I have numerous other symptoms (including optic neuritis, tremors, and multiple cognitive problems) with no explanation. Testing continues but I'm told not to worry about the MRI and CAT scan.

Hi KJ,

Yes, lesions can be scary.  But as you say they can be found normally in people as they age.  That is sometimes confusing, especially when we're in the middle of being diagnosied, but don't know with what exactly.

This is where we must place our trust in the expertise of our doctors.  And if you feel uncomfortable with the level of care and attention you receive from your doctor, then you are encouraged to seek a 2nd opinion.

I hope you get some concrete answers soon.  Being held up in limbo is no fun.