Update

[Ojibajo]

Hi everyone,

Well I had my Lumbar Puncture on December 10th (I think) and my VEP last week. I had my follow-up appointment with my neuro today. My VEP was normal, but my Lumbar Puncture was abnormal so I am being sent for some labs ANOTHER MRI some sort of nerve test and I think something else but I don't remember.

She is also going to try to rule out Lyme Disease and Lupus. She said she still doesn't have enough information for a diagnosis but she has a high suspicion that it is MS.

I don't really know what to think. I was sort of shocked that the Lumbar Puncture was abnormal since the VEP was normal. My symptoms are relatively mild thankfully but it makes me fearful for what;s to come and makes me wonder what or if I can do anything to stop it. I just hope if this is really happening I never get any worse while my mother is still alive because I don't want to tell her.

All this because I went to the doctor for a headache. Sheesh.

[COBOB]

VEP being normal is not that unusual.  If my memory is functioning correctly today, only about 60% of MS patients initially present with evidence of Optic Neuritis (an abnormal VEP).  The VEP only tests the Optic Nerves (CN2), chasm and tracts.  

CN2 is one of two pairs of cranial nerves that terminate in the cerebrum.  The remaining Cranial Nerve pairs (CN3-CN12) all terminate in at or near the Pons in the lower brain.  So, a positive VEP is diagnostic for ON, but a negative VEP doesn't help or exclude a diagnosis of MS.

Bob

[Ojibajo]

I was sort of exaggerating with the "Headache." Actually, I have a history of migraines. Once you get to know me you tend to find out that I tend to be sarcastic and have sometimes have a dry wit and a warped since of humor. Perhaps it's a coping mechanism. Perhaps it's insanity. Anyhoo...

I have a history of migraines. I was talking with my PCP about my meds to control them and hi though that maybe I should see a neuro just to see if there were other things to try to help control them. The neuro wanted to do the original MRI/MRA just to be thorough but didn't expect to find anything. I didn't really know that I had symptoms. Yes I had some of these weird things but I had always explained them away as something else.

My main symptoms are in my left arm. I always thought it was carpal tunne, or nerve damage from an old injury. Some of my leg issues I thought might be from a broken ankle that didn't heal correctly,,,stuff like that or poor circulation. I didn't realize that they were "symptoms." I have had obnoxious fatigue for the past year or two and I was told that it must be depression, even though I have had depression related fatigue before. I knew this was different, so I just dealt with it. What could I do. After the MRI found the lesions and my neuro told me he suspisions, I sort of had an "ah ha" moment and a lot of things started to make sense.  They are also going to fun some other tests to rule ot Lyme Disease and Lupus, but her suspicions are MS.

The last month has been a little emotional. This past week a little mind blowing. When the VEP came back normal. I honestly expected everything else to come back normal too. I would be lying if I said I wasn't scared. Even though I tend to be a crybaby, I haven't cried a lot about this. I won't let myself. If I start I might let a few tears fall and then I tell myself to fall. I don't have the right. So many people have it so much worse. But like I said, I would be lying if I said I wasn't scared. I read other posts on this site and I some of them terrify me. I take two dance classes and while I don't like winter I felt well enough this weekend to participate in some outdoor activities. I haven't fell well enough to do that in MONTHS!  I don't want that to change! I just wanna go, go, go! People used to compare me t the Energizer Bunny! Now some days I am more like a sloth! How can I feel this way now and maybe wake up other days and I can't get out of bed? I don't get it! How much worse is this going to get? What if I wake up one day and something doesn't move; or what if I am moving and something stops moving when I tell it to. Okay sorry I am rambling.  But I have so many things going through my mind and I don't know who to talk to or what to do with all of these random thoughts and worries.

[Sumanadevii]

Nevermind, I went back and read some of your older posts...you have the fatigue and heavy limbs...I get it now....

[Sumanadevii]

Maybe I am not following but you went to the doctor with a headache.  They have found lesions and your LP comes back with o bands.  There has not been any clinical attack at this point.  I wonder how they can diagnose this as MS without one?  Or does the doctor consider the headache the attack?  

Personally I think it would be wonderful if they could dx it now and get you on a DMD early.  As far as your mother, it would depend on how it is presented.  If you let her know it was found by accident and that you are feeling well and that there are medications today to prevent damage to your body, she may be okay with it.  It isn't the news any of us what to hear but calming her fears early would be of help.  Also, you may need to remind her that the MS she probably knows is not the MS of today.  There was a time when there was nothing to do for an MS patient.

[jensequitur]

The VEP being normal is a good sign - it means that whatever else is going on, at least your nerves are still conducting signals.

[Lulu54]

Sheesh pretty well sums it up. It is possible to have very mild symptoms with this disease and live quite well in spite of a diagnosis.  That may very well be the case for you - and I will hope if it's MS that is the course it continues to take.

I'm missing some of the obvious positive tests as well  but my MRI and LP results support a dx of MS.  Like you, it wasn't what I was expecting when I saw the doctor about a problem of numbness in my leg.  

I am convinced we have to avoid doctors because once they get ahold of us they can definitely find things that are wrong that need to be treated,! LOL  Seriously, I feel the doctors have our best interests in mind when they start all these tests.  

The great thing is when catching MS early the treatments available can really delay and sometimes even stop the disease progression.  

I'm sorry you're wading through the next set of tests - the dx process can really take a long to eliminate all the mimics.  Good luck with the next steps......... Lulu