Well, you definitely present a twist on the situation we usually see! I see the concern, but I also see what my take on it is. You have all the MRI evidence in the world for MS (much less likely for anything else), but few symptoms. That is the unusual part. Then there is the thing we see over and over. A neuro (specialist or not) who stated that it was a one-time thing, then saw that it might not be, and got her "back up." She quoted the "rule" that it wasn't likely to be MS with a negative LP. I'll get to this later, but there is NO rule or even a recommendation that a negative LP rules out the diagnosis of MS. Period!
The first MRI screams MS. The lesions are large, well-defined and in the typical areas for MS. The radiologist thinks it's MS. The first thing noted is that you have mild "atrophy." Atrophy means the brain has shrunk. It would only shrink if enough brain tissue has been damaged and then destroyed, for the whole brain to contract around and shrink in. This is a bigger finding than the hyperintense lesions. This means something has likely been going on for quite a long time.
I would like you to read the Health Page called "Lesions vs. Symptoms: This page discusses how MS can cause brain atrophy. Of course, other things can, too, but rarely with the combination of things you have told us.
http://www.medhelp.org/health_pages/Multiple+Sclerosis/Lesions-vs-Symptoms/show/61?cid=36
Okay, if I remember, you are 33. This is too young to have visible atrophy for any normal reason. But, you have fairly few symptoms. A tremor in the hand, some brief dizzy spells, abnormal fatigue, that episode where your legs collapsed under you, and heat intolerance. These together certainly suggest MS, but don't diagnose it. Can you also tells us how long your legs felt weak or abnormal after the fall while running?
The 2nd MRI (6 moths later) shows definite growth and progression of the lesions seen on the first MRI. The first lesions are larger and there are at least three new ones. Now some of the lesions are described as "perpendicular to the ventricles." This is the classic orientation of MS plaques. None of the lesions in either study show enhancement with the contrast, indicating they do not have new inflammation occurring.
So whatever was going on in the first MRI continued to get worse and that worsening was seen 6 months later. We don't know if this is the same process/attack that was continuing. We don't know that you had a second episode.
Another thing I am totally floored by is that this specialist is not breaking down walls to find out what it is you do have, given the progression on your MRIs. Did she even have any plans for follow up?
The MS "specialist" did a VEP and an LP which were negative. Based on this she states this is not MS. On your urging, your regular neuro did a workup for the things that could look like MS. One of these was Lyme. You need to check with your reg neuro and see if that test was the ELISA test for Lyme. If it was you need to ask that a "Western Blot" test be done. This is a more accurate test. BUT, from what I have read, if this were a galloping case of Lyme in the Central Nervous System you would be very, VERY, symptomatic - all over!
What this specialist did not do - and I find completely astonishing - is do an MRI of your spine, cervical and thoracic. Spinal lesions are much firmer evidence for the diagnosis of MS. It sounds to me like she had declared her opinion and didn't want to be proven wrong. You need to run from this woman as fast as your tired legs will carry you!
The first thing you need to request from your regular neurologist is an MRI of your cervical and thoracic spine done without and with contrast! Many diseases that cause lesions in the brain do not cause lesions in the spine. This is to be complete. Since you have so few symptoms, the spine may well be normal, but I would want a careful look at the brainstem. A lesion there could be the source of your episodes of dizziness.
The next thing you need is a new MS Specialist!!!!! take a breath !!!!!!!!!
One palce to look for a doc or a center with truly up-to-date info is with the Consortium of Multiple Sclerosis Clinics. This is an international group of clinics devoted to sharing info and assuring that they are practicing the best possible care with the most current information. Her is a link to see if there is one close to you. It would be worth a drive to get to a truly excellent doctor. Many here will attest to that.
http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=528
Now finally, and I will soon write up an article on this topic. There is no evidence, that I have seen or heard referenced, that all people who truly have MS will have positive Oligoclonal Bands "at Diagnosis!" Because of one study that showed that 100% of the people with KNOWN MS in their study had them with testing under rigorous condtions had O-Bands, it appears that some neurologist have jumpted to the conclusion that they can require positive O-Bands for diagnosis. This is beyond my comprehension. The confirmation study, which was larger, found only 92% had O-Bands, or 1 in 11. Again, this was NOT at diagnosis, but later in the disease.
And there is no evidence at all for saying that a negative VEP rules out MS. Period. That's just bizarre.
So tomorrow, you need to be firm about the neurologist, or some one, finding a truly excellent MS Speicalist to send you to.
You need MRIs of the spine as discribed above - and other people here have mentioned.
I would recommend a Western Blot test for Lyme (I still think this is unlikely)
And, given the marked progression of the lesions between the first and second MRIs of the brain, I think you should have that repeated also. Many articles discuss doing an MRI at 1 to 3 month intervals if things are changing fast.
One last thing, I promise. Your neuro wants to see "more symptoms." Tons of people have been diagnosed after complaining of just a little vertigo or a small area of numbness. You HAVE symptoms. I hope he is not waiting for frank paralysis!
These are my opinions. Yes, I expressed them strongly and you should know that I am not a neurologist, just a former pediatrician with a strong interest in the work up of things that look like MS. Your situation is "atypical" and that will/may make the diagnosis a little harder. But, you know you feel "off" and your MRIs substantiate that.
I wish you all the luck in the world.
Quix