Jan 25, 2010
Today I had the first appointment with my new MS Neuro. This is a man in his 60's whose life has been MS for decades. He's brilliant, kind, funny, compassionate and speaks the people's tongue. He is also Fluffysmom's Neuro.
I let him guide the visit, as he clearly has a routine and a rhythm. He basically went all over how all of my symptoms have shown up, did a detailed (read that ~45 minute) exam, looked at my most recent MRI and told me what he thinks. The man makes sense. And I learned a whole bunch of things for the forum, plus had some more validated.
To begin with, he doesn't see anyway that my disabling vertigo from 1999 to about 2004 was just peripheral problems. He acknowledges that my vestibular specialist, Dr. Epley, did find and treat some peripheral (inner ear) problems. But, he says, that my MS began in 1999 - of this he has no doubt. That means that I must resign as a person whose first symptoms were after the age of 50. Mine (revisionist version) began at 47, which also means I am 11 years into my disease.
It also means that I saw 7 neurologists, none of whom considered MS as my diagnosis. The most they came up with was Vertigo and Personality Disorder. That did some harm. So now I am on neuro #9, having been diagnosed by #8 who has moved out of area.
On exam he found R hemiparesis - weakness of the R leg and arm. I have "modest" spasticity in those limbs. In general medical lingo it often goes Mild -> Modest -> Moderate -> Major (Severe). Diffuse hyerreflexia R > L. R positive Babinski. I have a lot of areas with minor amounts of altered sensation on both sides, none very severe. Positive Rombergs even before I close my eyes. Unable to tandem walk or stand. Spastic gait. Rapidly alternating movements slightly reduced on right. Ocular dysmetria (the eyes don't move together) in looking toward the left, with nystagmus (new).
Then he told me something I didn't know. The right side of my face is slightly flattened out, noticeable in the naso-labial fold. This is from weakness of the facial muscles from Cranial Nerve VII. Also, my right eye is more open than my left. There is a muscle that encircles the entire eye called the "obicularis". When it contracts, it winks the eye tightly closed (as opposed to just allowing the lid to drop.) Think of it as the squint muscle. It acts as a sphincter. So when it is weak, the eye is often more open. He says I use my R eyebrow muscle to lift my lid more when I gaze upwards. I had no clue. It all sounds very attractive. Now, I'm going to have to go stare at myself in the mirror.
I just did and he's right!
Also, R foot and lower leg coolness with swelling, purple mottling, and acrocyanosis. This is what other doctors had referred to as Reflex Sympathetic Dystrophy.
That's pretty much it. Mostly what I have always had with some new eye movement difficulties and nystagmus. Exam pretty much unchanged.
MRI (Jan, '09) - Hardly worth the effort. A couple measley T2 hyperintense lesions in frontal lobes, a few scattered punctate ones. Cervical spine - good-sized R sided lesion in pyramidal tract and involving the sympathetic nervous system which runs up and down along side the motor tracts. Tiny one in the R medulla, equivocal one at T1.
Then he told me what he thought.
This is where he clarified things for me. Because of the insidious loss of strength on my right and gradually worsening bladder troubles, I have worried that I might have PPMS. The loss seems greater if you look at the disease only from 2004 onward. But, if you look at it for 5 additional years, it's not much deterioration. He put it this way: I have RRMS, but have a great deal of lesion load that is in axonal degeneration rather than inflammatory T2 lesions. This language is the one we use when describing the accrual of disability. HOWEVER, this is not a PPMS process, because it would be very unlikely to have PPMS for 11 years and NOT have both legs involved with motor weakness and spasticity. The classic pattern of PPMS is almost invariably a spastic paraparesis - weakness of both legs with spasticity. Even if it just starts in one leg, the other becomes involved eventually, sooner, usually, than later.
I jokingly made a comment about how so few lesions can wreak such havoc on my body. He snorted and said that we can't see "most of the lesions" in MS with our state of the art machines. (Take note, Friends!)
We talked about my increasing L'Hermittes - the reason I saw him today. The good news is my "old" L'Hermittes was not L'Hermittes at all! (If you remember it is the vibrational, jelly-like feeling in my Left anterior thigh). When he was examining me, I had a very tender spot over my left pelvis at the hip. My problem is something we have mentioned on the forum called Meralgic Paresthetica. This is damage to the femoral nerve from a variety of causes - in my case likely my obesity and overhanging abdomen.
However, the new stuff which is also vibrational, jelly-like buzzing in my left torso, arm and L face IS a new onset of L'Hermitte's Sign. I commented "the facial wierdness couldn't be from a cervical lesion." He grinned and said, "Aha! That's because you are a pediatrician and not a neuroanatomist! The sensory root nucleus of the Trigeminal Nerve extends down from the pons all the way to the 2nd Cervical vertebra." Then it was my turn to say "Aha!" So, all of you to whom I have said that a cervical lesion couldn't cause face pain or numbness - you may flog me in turn!
Then we talked about meds. I wanted to go back on Avonex, but he was a "no go" on that, because of my report of morbid thinking on it. It seems that he does not think my pattern of damage will respond to the DMDs. I said I didn't want to go on Copaxone, because I would rather be depressed than itch! He doesn't like or use Copaxone unless the patient really wants it. He calls it a "wimpy med". I knew some neuros felt that way, but clearly not all, and we have members here who have done stunningly well on Copaxone - so I think something must have happened in the past to bias him against it.
He said he would rather wait for the oral meds with me. This surprised me, but it fits with other things he said.
He thinks that as far as the incontinence has gone that I should be on a med for it.
He wants me to use a cane - ALL the time.
Finally, he said my prognosis was very good. I didn't ask, "good for what", but I took it to mean that he didn't think I would become very disabled. Yippee! I think my whole attitude will turn around. (Do you think I could still become a ballerina? Should I not have turned down DeeVee's gift of a pink tutu at Christmas?)
Another pearl that dropped from his lips was that 27% of people with MS will develop Trigeminal Neuralgia at some point in time. That is a big number. I questioned it, and he repeated it. It can be quite variable in how it shows up, and a lot of doctors wrongly dismiss the atypical presentations.
More later if I think of things.