ADEM versus MS

[shelleyannjohnson]

April marks my one year anniversary of a life changing event, which is still undiagnosed. I woke up one morning and was extremely dizzy. I walked to work as I always did, however, I would weave back and forth like I was drunk. And even though I tried to stop when I approached an intersection, my legs would not do what my brain was telling them to do. I had just turned 44 years old and was living in Europe in an unfamiliar medical situation, so I tried using over the counter drugs to get rid of what I thought was an inner ear infection. As my condition continued for two more weeks, I decided it was time to go to a doctor. I got into see a neurologist who immediately scheduled me for an MR spectroscopy. The results were that I had a 1.5 cm lesion which showed the chemical thumbprint on a tumor. This report also talked about numerous small white matter lesions. So, I was diagnosed as having a brain tumor. In June, I headed back to the states to have this tumor treated. I was sent to see a neurosurgeon, who was going to biopsy my tumor. However, the tumor was in my cerebellum next to my brainstem, so he wanted another MRI to see its exact location. I had my next MRI in July. The results of came back and the lesion had shrunk, but once again I had numerous micro lesions in different locations. The neurosurgeon said that tumors don’t shrink, so I didn’t have a tumor, but he didn’t know what I had. So in September, I was sent to ANOTHER neurologist. By this time, the dizzy had really improved, but my legs, especially my left one was so incredibly weak. I also had buzzing or vibrating in my feet, ringing in my ears and exhaustion. My new neurologist did an excellent job in researching what my disease really was. He ran a lot of blood tests that would rule out several other CNS diseases. I had a VEP done, which was negative. I had a lumbar puncture done, which showed 12 CSF Oligoclonal bands that were in my CSF and not my serum. I had another MRI done in October which had only the remains of the large lesion, but once again numerous micro lesions. My neurologist said that I probably had MS and wanted to start me on DMD. I knew that even though my CSF was positive for O bands, I had not met the criteria for diagnosis, since I had only one attack and one lesion. I decided not to take the DMD and made an appointment at an MS Clinic. My new neurologist explained to me that I do not meet the criteria to be classified as having MS. Instead, she said that I have ADEM (Acute Disseminated Encephalomyelitis). What can I say? I had NEVER heard of this disease before, so I did A LOT of research only to find out that it is a rare disease and usually affects children. I guess in my heart, I feel that I have MS. The funny thing is….I don’t want a diagnosis so that I can start the DMD, I just want a DIAGNOSIS! ADEM is a onetime event….MS can be life changing. If I had ADEM in April 2008, why am I still struggling with leg weakness? I guess I want a diagnosis so I can know IF the road ahead is still going to be bumpy, or is the worse behind me? Sorry, I just needed to vent my frustration! I am a 45 year old woman, who is otherwise very healthy, no high blood pressure or anything.

[kwarendorf]

Hi Lelose _ Welcome to the group.

This thread is a little on the old side. Many of the original contribitors no longer visit, including lauradun. I just didn't want you to think she was ignoring you :-)

Kyle

[Lelose]

Well that is a perfect metaphor from your doctor!  My husband had ADEM in May 2012. It's January 2014 and he is still recovering.  He has chronic leg tingling, fatigue and lost bladder function.  Sorry that others have experienced ADEM but it's always a bit reassuring to know there are others out there.  I always described ADEM as winning the sick lottery because it's rarity.  Thanks for all of your posts, old and new.  I will keep reading on looking for answers to the unknown related to ADEM.  x

[PeninaD]

It might actually be what is called, a Clinically Isolated Event.

Either way, you should always be suspicious if you have further symptoms, as either way, ADEM or an isolated event, you might be more prone to develop full on MS as time goes on.

[lauradun]

I'm nearing my one year anniversary of an ADEM attack. My doctor explained it in a metaphor: if you broke your leg, the doctor would put it in a cast, and you would not use it until it healed. You (me) broke your brain, but unfortunately, you have to keep using it, to breathe, to live, etc. So your brain is working overtime trying to heal itself and keep functioning. I tend to have severe weakness in my arms and/or legs if I've overdone it.

I don't know if you have ADEM or MS. I too share the "well, if it happens again, it's MS" round of doctors. I started going to a counselor for tools on how to cope, and the biggest thing she has said is "Give yourself a break. Don't demand so much of yourself that you spend time disappointed in your limitations." Good advice.

I wish you luck. I have found a great community recently: www.myelitis.org. Check it out. There are also links to specialists and their research.

Best to you! Laura

[shelleyannjohnson]

First of all, I am SO SORRY for not thinking about the long paragraph. I do not see a way to edit my post, or I would. If there is a way, please let me know, so that it will be easier to read.

Next, to answer some of your questions. With the exception of my csf being positive for O Bands, all other results were in the normal range.

I never had a preceding illness or infection.

Since being diagnosed with ADEM I have read everything that I can get my hands/eyes on...mostly on the internet. However, most of the material is related to children, since this disease seems to affect them more often than adults.

I guess my one question is:  If it is ADEM and I have only that 1 lesions, why have my symptoms so drastically changed from dizziness to leg weakness and some sensory problems. The lesion location hasn't changed! Does that make any sense to you.

I have another MRI scheduled for next week, and then I will see my neurologist in May. I have already determined, even before your suggestion, that I will ask for another LP.

Thanks SO MUCH for just listening and giving your opinion, it means a lot to me.

[Quixotic1]

Hi, Welcome to our part of the world.  You actually ahve some company with the possible Dx of ADEM.  We should see if we can round up Santana.

I agree that you share parts of both ADEM and MS, but that is almost always the case.  I did some reading - all stuff that you have likely already read - on ADEM and oligoclonal bands.  And I came away with a suspicion that you actually have MS and have only had the one attack.

ADEM can cause transient O-Bands.  It happens in about 30% or fewer.   I thought this was interesting.  In MS the wisdom is that the O-Bands are permanent, and all you do is acquire more.  What I didn't see is the time period it took for the O-Bands in ADEM to disappear.  So, another LP might help, in that, if there were fewer, it would point to ADEM.

The other thing that I picked up were case reports of people with ADEM who had O-Bands seemed to have very few.  You have a whole lot!  That is the thing that makes me think - MS.

But, it seems that you are going to have to wait a bit more.  That s ucks.  Sorry, it just does.

As for thinking one of the initial lesions was actually a tumor, this is not the uncommon.  sometimes a lesion (in either disease) can have an enormous amount of swelling around it and looks just like a tumor.  The difference is that it shrinks, like yours did.

ADEM also often has an elevated cell count and protein level, but it isn't clear to me that you had the LP early enough to have caught these.  Do you have those values?

And as for still stuggling with the effects of the lesions, I don't think there is any guarantee that there won't be some lingering disability (especially in an adult) from that one first illness.   Santana is still recovering eyesight now at least two (three?) years later.

Speaking of which, did you have a preceding illness/infection of ANY type preceding all of this?  I may have missed it if you did.  You wrote your post all in one paragraph.  that makes it hard for many of us to read.  Because of visual tracking problems, we can't keep our eyes on the right line and lose our place.  So, we would appreciate it if you could break things up into paragraphs.

So, settle in with us a while and we'll swap stories.  You have clearly researched your situation.  We are a group that likes good, accurate info as well as friendship and support.

Welcome again,

Quix

[Sarahsmom46]

You have been through quite a year.  I can understand perfectly because my life changing event happened last May and I know I am nearing my one year anniversary as well.  I went through all the same types of testing as you and the diagnosis has not really changed.  For me it is possible MS (like you I don't meet all the criteria for MS) and more definitely partial transverse myelitis.  I am still struggling with the leg weakness as well, but otherwise recovered pretty well.  I was told by my neuro recently that they don't know if I will recover much more as so much time has passed, but then I heard that it can take a year or more to know how much you will recover.  I would expect that ADEM might follow a similar recovery period.  Ask you doctor about it.  

There is no doubt that it is unsettling to say the least to not know if you will ever get back to your pre-illness "normal"  we might be dealing with a new normal.  I hope that you have had the opportunity to take physical therapy as that helped me get some of my strength back.  Swimming also helped tremendously and using a kickboard was the best idea someone at my gym got me started on.  Hang in there as it sounds like your body is still trying to recover from what happened a year ago.  

My best,

Julie (Sarahsmom)