MS Awareness Month: Getting Diagnosed with Multiple Sclerosis

By Lisa Emrich, Health Guide Friday, March 05, 2010
So you think you have MS? Getting a diagnosis of multiple sclerosis isn't an easy task as it's a diagnosis of elimination and requires collection of evidence, without having a single definitive test.   Here are some shareposts which will help explain the diagnosis process, different types of ...
My Story of Being Diagnosed with MS
3/ 6/10 4:44pm

Too short!  

Lisa Emrich, Health Guide
3/ 6/10 5:01pm

LOL.  Some of these videos are very short by design.  I think that I got MY personal diagnosis story down to about 6 minutes.  It is supposed to go up on Tuesday which is the 10 yr anniversary of my going blind (optic neuritis).  I tried to keep these short because there are 9 of them in total.  Too much of Lisa might not be a good thing all at once, lol.  Wink

3/ 8/10 10:32am
No teleprompter? LOL Defining "active" lesions as those that respond to the dye might be an area MS organizations and researchers might want to change. Although my symptoms all get much worse when I am tired, stressed, very hot, or during the change of seasons, none of my lesions reacted to the dye when I had my annual MRIs. However, many of my lesions got worse that is became dead areas. The dead areas were those neurons that showed no activity at all. Overtime, the signal that might be weak or shaky in my brain stopped altogether over three years. For a few years, some lesions showed improvement. Then, none of them showed improvement. Also, if we expect Copaxone, Rebif, and other MS fighting drugs to work, then after our first diagnosis of MS, if we are lucky, our drugs might prevent another active attack. But, for those lucky people, neurologists may be reluctant to diagnosis MS. Am I right? Anyone have any information or clarification about "active" lesions vs. "inactive" lesions? The other question I have is: Could there be different types of MS based on different causes? For some MS might be caused by the mono virus. Others may get another form of MS because they eat, drink, or otherwise absorb toxic metals in the form of pesticides, herbicides, or industrial pollutants. Others may get MS from poor blood flow in and out of the brain. Another form of MS may be genetic. Perhaps researchers are defining MS too narrowly?
Lisa Emrich, Health Guide
3/ 8/10 10:55am

Great comment!

 

Buried deep within posts and links to other posts is this one - Beginner's Guide to MS: What is a Lesion? - which addresses some of the questions you raise regarding "active" lesions and "black holes" in the brain.  I'll go back and add this to the list of posts above.

 

It can be confusing to use the term "active" lesions when really we mean gadolinium-enhanced lesions or just "enhanced" lesions.  As you describe, we can have active symptoms but not "active" lesions.  Now that I think of it, the only time MRI showed enhanced lesions for me was during the diagnosis process. 

 

Good point regarding getting on the MS drugs when they might be most effective early on.  And I have read (can't remember where just now) that there is some thought that perhaps multiple sclerosis is really a large umbrella title for several different diseases with different causes.  That would explain why we respond differently to the drugs from individual to individual.  Different causes.

 

There was a time, not long ago at all, that neuromyelitis optica (NMO or Devic's disease) was considered a rare form of MS.  Now it is recognized as a separate disease and even has a definitive blood test.  People with Devic's actually do worse on the MS disease-modulating drugs.

 

You've brought up some great points.  Thank you for starting this discussion!

 

OK. Different subject.  So are you saying that it is obvious I NEED a teleprompter?  'Cause I basically turned my little digital camera on and talked.  I do recall having to tape this particular segment more than once because I was stumbling on "demyelinating" - I had to stop and say that word about 10 times to get it to flow.  Tongue out

3/ 8/10 12:19pm

OMG.  You were absolutely great without a teleprompter.  I was referring to all the media coverage deriding the use of teleprompters by high-profile speakers.  I noticed at once that you were looking at us not down at a teleprompter which I find amazing.  It is really difficult to give a presentation without reading from notes or a teleprompter.  I did not know about Devic's diagnosis.  Very interesting.  Links are also great.  Thanks again Lisa.

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By Lisa Emrich, Health Guide— Last Modified: 07/10/11, First Published: 03/05/10