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EEG and MS relapse
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EEG and MS relapse

I have posted this question on another board, many replies but confused and some feel I WANT TO HAVE MS.

I was dx with MS over 25 years ago, my MS has been benign, no changes in MRI all these years.

7 weeks ago I presented with stroke like symptoms, arm went limp and a slurred,  A minute later I was fine.  This happened 3 more times within 2 days so I went to the ER.  The did CT scan, MRI, EEG etc...  They were unsure what was wrong with me.  Sent me home 3 days later.

Symptoms continues, but only with movement.  If I sit still I am ok, I move and I start to spasm, get weak and slur.  Went to my MS doc and he did a 25 hour EEG found no seizures, thought it must be my back.  Finally he ran another MRI and found 3 lesions, somehow the hospital missed them,.


My question is.... why dint the EEG show my MS attacks happening?  How the heck did the hospital miss my 3 bright lesions???   I do believe I have MS, however the presentation is so odd and after having 4 neuros treat me within 7 weeks, why are they confused and just throwing darts now telling me.. ok well lets try steroids and maybe some MS meds?  Should I seek a high neuro to look into this or you think these neuros finally got it together and I am in fact having a relapse?

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2015036_tn?1333001388
The only things I can think of with regard to the hospital missing enhancing lesions, it that an MS specialist must not have been called in to read them.  Or perhaps the radiologist missed them.  Your neurologist is best qualified to read your mri, and he did find them.  

The EEG was set to make sure you weren't having true seizures.  It's not looking for MS, it's looking for epileptic activity.  

It just looks like the hospital dropped the ball.  At least your neuro figured out what was going on.

I don't think your neurologist you have has missed your diagnosis.  Has he mentioned high dose steroids for the relapse?  If he hasn't, ask him about it...   Also, the term "Benign MS" is misleading.  Only about 5% of people that are diagnosed with "Benign MS" actually end up having a benign disease course.  In most cases, the disease does progress, at least to some degree.  As always, MS is a difficult to understand/ and unpredictable disease.

Unless you find that your current specialist is not going to act in your behalf- I'd stick with him for a while.  Going to another specialist right now, would just start the process all over again-- and you need treatment for this relapse now,

Tammy
6 Comments Post a Comment
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2015036_tn?1333001388
The only things I can think of with regard to the hospital missing enhancing lesions, it that an MS specialist must not have been called in to read them.  Or perhaps the radiologist missed them.  Your neurologist is best qualified to read your mri, and he did find them.  

The EEG was set to make sure you weren't having true seizures.  It's not looking for MS, it's looking for epileptic activity.  

It just looks like the hospital dropped the ball.  At least your neuro figured out what was going on.

I don't think your neurologist you have has missed your diagnosis.  Has he mentioned high dose steroids for the relapse?  If he hasn't, ask him about it...   Also, the term "Benign MS" is misleading.  Only about 5% of people that are diagnosed with "Benign MS" actually end up having a benign disease course.  In most cases, the disease does progress, at least to some degree.  As always, MS is a difficult to understand/ and unpredictable disease.

Unless you find that your current specialist is not going to act in your behalf- I'd stick with him for a while.  Going to another specialist right now, would just start the process all over again-- and you need treatment for this relapse now,

Tammy
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1090984_tn?1339099399
I was benign until this happened.  But I only have problems when I move, hence the stroke like symptoms.  I never heard of MS behaving such a way, but apparently in this case it does.   I cant walk when I get out of chair or bed, but if I keep walking I am fine.   Sometimes I get this jolty up my leg and I slur and I look like I am having a stoke or have cerebral palsy.  Very odd and scary symptom, not to mention embarrassing.
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2015036_tn?1333001388
You're right, it's certainly odd...  Does your neurologist want to do anything about it?
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1090984_tn?1339099399
He is treating it like it's MS.  Whats funny is that he was wanted a spinal tap to rule out I even had MS because I had been so stable with no meds all these years.  My scans showed no progression what so ever.

Then this stroke issue started.  I feel a zing go up my leg, my hand turns into a claw and my face contorts and I slur for about a minute then I am fine.  

I dont want to hurt my neuros feelings but I need a referral for a university neuro and I am embarrassed to ask him for one.
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987762_tn?1331031553
I don't understand the benign MS dx, from my understanding if a person is living, its often an accidental 'MRI' finding of demyelination in a symptom free patient or discovered in a deceased patient who didn't have a dx of MS. The key component for 'benign' being symptom free! I'm pretty sure we have a health page on it, found to the far right of your screen, may help to read about the different types of MS.

I get the idea that you must of had and still do have clinical sx's of lesions, for MS to even be suspected, otherwise MS wouldn't come up if a person had no sx's or clinical signs and no diagnostic evidence (MRI etc). MS is still suppose to be a clinical dx, backed up by diagnostic evidence (MRI etc). So even though, over many years your MRI's may not have shown demyelination, your physical self or sx's would have to of been consistent with the dx of MS for the dx after all this time to still be standing.

Few neuro's today would dx with out some MRI evidence though, there is more known about MS and its many mimics see Mcdonald Criteria. The multiple 'Atypical' aspects you have eg dx benign MS, no MRI evidence or changes for 25yrs, no relapses since dx, sx's improve with movement and if those bright spots are spinal 'cord' lesions, with still none showing up in the brain, that would also be unusual and it all opens up the 'possibility', that it may be something other than MS.

I wouldn't think it was in your best interest to worry if your neuro would get his feelings hurt if you ask for a referal to an MS specialist, if he did or worse refused, then from my perspective it would be even more important that you do so! It maybe less embarrassing to you, if you phrase it as an advice seeking question, as in.... "Do you think it would be a good idea to see an MS specialist? He or she may of seen what's happened to me many times before, I think it might be helpful to me, what do you think?" not necessarily that question but if its not confrontational and advice seeking, I can't see there would be any reason not to be given a referral to an MS specialist.

Let us know how you get on, and please ask any questions you may have, we're a supportive community and try to do what we can to help others, no question is off limits ;o)

Cheers..........JJ      

  
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1090984_tn?1339099399
The spots do show up on the brain, however the symptoms are usual.  I guess it is what it is.  :(
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