MS and Epstein Barr....help

[kpolk]

My doctors and my neuro have been on the MS train since severe bilateral optic neuritis was found 2.5 months ago. I do have the numbness and tingling in hands and feet, more so on left side. I have numerous ms symptoms along with the extreme fatigue, and severe drop leg, my peroneal nerve does not work properly, almost completely non functional.

Have since had all mri's, but they found no brain or spinal lesions. But my RA factor came back high in blood and spinal fluid. Then neuro opthamologist has said I have 40% vision loss in both eyes, and there is damage from the ON. Well I am now being sent not only to a ms specialist I am being sent to a rhuematologist for the high RA/RF factor. There was RA found on my neck and spine.

Well now to top all this off, I have been diagnosed with Epstein Barr...numbers are 8.1. But not being told much about it except it is exaserbating all that is going on in my body. And causing me to flair horribly. So now docs are on the lupus train as well. They are saying I now have Fibro, along with the RA is a for sure diagnosis. But I either have MS or Lupus, one or the other. I am so confused and wished I could find out something. But am reading so much about EB being linked to the MS...anyone in my shoes, or been in my shoes with all of this??? Help please...

[LisaL77]

Oh my goodness you got hit by a tsunami. I had Epstein Barr back in '87. Never been the same since. Tired every day of my life. Now look where I am.

I think that EB kicked off MS. For real. Hoping you find answers soon.

[Redwings]

Hi kpolk:
The EB virus has been linked to MS. But that doesn't mean it always is. I had EB exposure and I don't have MS. I've been diagnosed with neuromyelitis optica (NMO) instead.

There's also a misconception that optic neuritis (ON) occurs only with MS. But it can occur with any autoimmune disease. Recurrent ON has also been found to exist as a disease by itself (called chronic relapsing [or recurrent] inflammatory optic neuropathy, or CRION). And sometimes no cause is ever found.

Your EB and ON might be linked to MS, they might not. It's important that you don't jump to any conclusions just because links exist. The whole tree of differential diagnosis has to be gone through to come up with one or more diagnoses. The tricky thing right now is that, at the moment, you don't meet the criteria for an MS diagnosis. You currently don't have brain or spinal cord lesions, and all other possible causes for your symptoms haven't yet been ruled out or accounted for. In fact, it sounds like there are still more than one possible other causes for your symptoms. And it can be a long and frustrating process in working through the differentials.

There's one other thing to consider that you didn't mention in your post. In MS, it's more typical for ON to occur in only one eye at a time. Bilateral ON can and does occur in MS, but unilateral is more common. A bilateral case means that other possible causes should be considered. In the group of conditions known as the Neuromyelits Spectrum Disorders, ON -- particularly bilateral ON -- can occur without there being any brain or spinal cord lesions.

NMO is not MS, although it is frequently misdiagnosed as MS (that's what happened to me.) NMO is associated with an antibody that can be tested for with a simple blood test. A positive test is very specific for NMO and is an absolute indication of the presence of the disease. Unfortunately, there's a high false negative rate (between 30 and 50%), so a negative test doesn't rule out NMO. In that case, NMO has to diagnosed based on what the condition is acting like, which can take some time.

Have you had the test for the NMO-IgG antibody? If you don't know, be sure to ask your neurologist and neuro-ophthalmologist about it. NMO, like lupus, can be a serious disease on its own. Considering how unclear your diagnostic picture is right now, it seems important that you have the test. The treatments for NMO and MS are different, so it's critical to know if you're in the NMO spectrum.

So remember, EB has been linked to MS, but it doesn't automatically mean that your case is. Right now it's too soon to know. As confusing and frustrating as it is, now is the time for patience. I hope you get some answers sooner rather than later. Hang in there!

[Tawanda]

????

As for myself, the genetic disposition towards M.S. was born in me due to my family history with the disease, but there have been several theories as to what finally detonated the actual bomb including: Mono in college, my pregnancy, my Preclampsia during my pregnancy, the stress of having a baby at such a ripe age (37) and the exhaustion of caring for her AND the final suspect...Lyme Disease (incidentally my husband also contracted Lyme Disease a few years later and I think he was waiting for M.S. to get him too!). Perhaps it takes more than one trigger. Maybe it takes 3 or 5 kinds of triggers to make that perfect M.S. storm. Who knows?

Just think, if we were raised in plastic bubbles like "The Boy In The Plastic Bubble", none of us would probably ever get M.S. whether we had a familial disposition to the disease or not! I guess living with M.S. is preferable to that...I think.

[kpolk]

Thanks for your replys....NMO, never heard it mentioned at all. So will ask tomorrow when I go to rhuemy, this is my first appt with her, she is a lupus specialist as well. I too am predisposed to ms. My grandmother had ms, my mother has severe RA and my uncle(mothers brother) has weggoners disease(sp?). From the onset of the ON everyone I have seen, and I mean everyone, has said MS period. No one would look at anything else and I was not tested for the mimickers until recently and that is how the high RA/RF factor was found and the epstein barr was found. Was also told that my acid level in my body is astronomical, something like 1000 times more than I should have.

I have severe inflammation in my left leg, and do have a for sure diagnosis of drop leg and foot. And all the nerve disorders have been ruled out as well, with the exception of the peroneal nerve that does not work on left leg. During nerve conduction, my hubby was in room, they had me looking away, and was asking me ok you feel that, I said no, kept up and kept asking and I really felt like I was being toyed with and was getting very aggrevated.

I looked to my hubby, and he was shaking his head no, and mouthed to me it's ok....so doc asked my hubby to let him shock him with 40, what ever that means, so hubby let him and he about came out of chair, then doc said well I am shocking her peroneal never with 400 and she has no reaction....but shocked hubby with 40 and he went nuts! My body is just doing crazy things, and the pain in my hands and feet, the numbness and tingling is constant. The fatigue is crazy bad, and the weakness on the left side is worsening.

I feel like I am losing my mind, but I know I do have to be patient, I know there is a long process. And I have some things going on in my back now as well, wondering if it is spasticity??? not quiet sure what that is either so trying to find out if that is what is going on or if that is something new.

The epstein barr is new to me, never had mono, ever!!!! How did I freaking get it and why is my doc telling me that my numbers are off the graph high???