MS vs. SLE

[aris44]

Hello.  I have been plagued by overwhelming fatigue, tremors, vision changes, vertigo/loss of proprioception, difficulty finding words, confusion, and limb heaviness/weakness, all of which come and go in a "relapsing" manner lasting anywhere from hours to a week or more.  I have been thoroughly evaluated for MS (MRI, VEP's, LP...all negative) and excessive labs.  The only things that have come back abnormal are positive IgG EBV in spinal fluid and the connective tissue profile (blood) showed positive dsDNA but negative ANA.  Could this all be Lupus without the typical sx's (rash, etc.) or more likely MS just not "showing up" yet?  

Thanks,
Samantha

[Zacksmomi]

Hi there,
Sorry to hear you are having wierd stuff going on.  You have a lot of the same symptoms as I do.  My MRI was pretty clear for MS showing lesions that formed Dawson's fingers (which I guess pretty much is only done by MS) so I was given a diagnosis really fast.  I did not have to have a slew of blood work. I have been on DMD's for a year.  
However, do to the randomness of my symptoms I am now being tested for something called Sarcoidosis.  I don't think I have that, but the Dr wants to rule it out since my MS is not responding to meds and my symptoms come and go so much.  
So I wish I could say your symptoms are MS, but now even with a clear MRI (I thought) and 14 months and several Dr appts gone by, they are questioning if I have MS.  These issues are tricky.  Just hang in there and make sure you stick with the Dr's.

Google Epstein Barr virus and MS and there is a slew of info. However, 95% of people have been exposed to the Epstein Barr virus.  I read that most people get it in early childhood and are not effected, but those who get it in teen years end up with Mono and that has been looked at as a trigger for people who have the MS gene or whatever we have to start the process of the disease.  
I hope that was not total gibberish, my brain is not working right at the moment.

I hope you have answers soon
D

[aris44]

Anybody hear of a correlation between MS and epstein barr virus?  With MS does your fatigue come and go?  And tremors?  I have both that seem to come and go, sometimes together, sometimes not.  Most often the fatigue is worse in the afternoon, though sometimes it is there right when I wake up.  Tremors come and go as well.  Is that pretty uncharacteristic of MS?

[PastorDan]

Sorry; didn't mean to make this all about me.    I will pray that answers come for you, too.

[PastorDan]

I'm going to pull my old labs.  Rare as SLE is among males, that doesn't mean it doesn't happen.  I realized that I've had an unexpalined rash on the feet for a while.  Only yesterday did I mentally connect the dots that this might tie in with the other stuff I've been experiencing.  I need to read more about SLE, too.

[HVAC]

That is strange they usually only do an anti DNA if the ANA is positive.

Try not to worry too much until it is all sorted out.

If I have learned one thing the wheels of medicine spin at their own speed.

Alex

[aris44]

Nope...they did an entire connective tissue panel.  The ANA was negative but the antiDNA was positive.

[HVAC]

Did you mean positive ANA and a negative anti DNA ? Because they do the antiDNA when you have a positive ANA and if it is negative that rules out Lupus.

Alex

[aris44]

Hi, thanks for your comment.  The vision problems occurred for about 2 weeks.  The tingling in face lasted 2-3 days.  The MASSIVE fatigue seems to come in waves that can last several hours at a time, though it is usually in the late afternoon so it just lasts until I go to bed.  Lupus seems so unlikely to me as I do not have many typical lupus symptoms.  And none of my docs seem to know what to make of the lab tests.  Any ideas?  Thanks.

[essdipity]

Hi Samantha, and welcome.

I'm sorry you're having so many symptoms and not getting answers. In MS, 'attacks' of the same symptoms must last at least 24 hours, and must be separated by at least 30 days. From what you describe, this doesn't seem to be what's going on with you. That and the fact that your MS testing was all negative makes me think MS is not at the root of things, but I'm sure no doctor.

A few people here are quite knowledgeable about lupus, but you are likely to get much more info and support on Medhelp's lupus forum.

I hope you have a good doctor who is aggressively pursuing answers for you.

ess