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My MS History is Rewritten!

Jan 25, 2010 - 20 comments

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.

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572651 tn?1530999357
by Lulu54, Jan 25, 2010
What a good appointment - it sounds like it was well worth your time and trouble to see this new doc.  AND it sounds like he gave you some respect for your credentials too.  Its about time those doctors treating you could relate to you as a patient and a peer.


405614 tn?1329144114
by Fluffysmom, Jan 25, 2010
Wow, I'm cooking dinner but felt compelled to come check the forum; I'm glad it went so well, he his a definite keeper!  I'll comment more later...

739070 tn?1338603402
by rendean, Jan 25, 2010
What a great neuro! Wish my exams were more thorough like yours. You definitely have found a keeper.

I like the TN pearl as I was told my face pain was atypical face pain...couldn't be TN.

Very good news regarding the PPMS being ruled out!!


1068422 tn?1293684253
by legalgirl5, Jan 25, 2010
What a fantastic appointment!  Great news and wonderful to have someone who understands and treats you like a person!  Congratulations on finally finding a good neuro!

147426 tn?1317265632
by Quixotic1, Jan 25, 2010
It just struck me that maybe we could have a Health Page where people just describe "good, Neuro visits" because a lot of people don't know what the possibilities are.  


405614 tn?1329144114
by Fluffysmom, Jan 25, 2010
I'm back, after a yummy dinner and a really baad Avonex injection.  How soon did he say the oral meds will be ready?  I hit the same spot on the top of my left thigh where the muscle wiggled and knotted, but this time it hurt, and I could have sworn I had a weird taste in my mouth.  I've iced it, taken meds.

You came away with a lot of good information that will be helpful for the forum. Good news, too.  I'm so glad that your #8 moved out of the area, as he would have become my #4; instead, you got a great #9 and I got a great #4.

He will be following up with you, right?  How soon?

Funny, he's a bit more cryptic with me, maybe because of my history of going over chart notes, and complaining about things that don't match up.  He wants me to trust him, and I do.  I just want to know everything, lol.  He had his resident do the exam, but he was watching every move, and repeating things, clarifying things; we both learned.

It is awesome that you are being seen and treated as a peer as well as a patient; respected.  

I do love that snort he does; he did that my first visit, while pointing out the lesions on the MRI that he couldn't believe were missed before, and again when mentioning the quality of the spinal films, said they could have done better than that.

Did he suggest which med for incontinence?  The ones I've tried for overactive bladder/IC/whatever somebody called it have all been very drying; tongue stuck to roof of mouth.  I hope there is a better option for you, or it's something that doesn't effect you that way.

Yes, yes for the Health page describing "good Neuro visits".  It might be depressing to those who can't find one, but it could be inspiring to those same people to keep looking.  I'd heard of the elusive Good Neuro, so I kept plugging along.  It would be great to have a lot of testamonials, so to speak, all wrapped up in a nice Health Page.

Thanks for taking the time to share all this with us.


751951 tn?1406632863
by PastorDan, Jan 26, 2010
Very happy to read all of this news for you, Dr. Q.  One question about this proposed health page: will people be free to name names?  As things stand, I'm still waiting for my COBRA letter, so my coverage ought to be pretty good, and Mapquest tells me that we could get to your neck of the woods in a mere 35 hours and 49 minutes of nonstop driving.  Round trip would only be $480 in gas!  Tell your neuro to clear a spot on his calendar, preferably a Friday or Monday!

Avatar universal
by chocolate2dreams, Jan 26, 2010
Hello everyone, I am new to the blog and I do NOT have MS. However my husband has MS.

We have been struggling with this for 5 years, I should say my husband has been struggling physically and emotionally. All was going fantastic, with no meds for 2 years, he was eating Chocolate high in Antioxidants, which eliminated the RLS. Until last week when he woke from a nap to discover his vision in his right eye was partially blurred.

I must admit our Neuro is fantastic with a great support team. He decided to go to emerg. on a Saturday Jan 16 and from there an appointment with an Neuro –Ophthalmologist was scheduled on Monday Jan 18. We contacted our Neuro support team and by Friday he was on intervenes Steroids for 5 days. Today Jan 26 is his last day!  He indicated that some of the vision is coming back but the weeks ahead will tell more. He is not open to learning the computer but I so wish he would, this looks like a great forum.
We have been lucky with care in Canada, Ontario; however the Insurance companies are not so co-operative... I look forward to your comments and advice...

Has anyone looked into the new findings by Dr. Zamboni..
Best of Health to all...

667078 tn?1316000935
by HVAC, Jan 26, 2010


755322 tn?1330269114
by Khiba, Jan 27, 2010

Thanks for your great journal post. I love reading your down to earth funny reports packed full of good info. I am so glad you have a really great Neuro who really comprehends MS. They are so hard to find! I am only on Neuro #4 so feel lucky.

Glad to hear you are doing so well and not progressing. So glad its not PPMS too. Phew!

Looking forward to finding out which oral med he is considering. Hope they come out soon too.

Have a great day!

1142230 tn?1268675666
by Wendella247, Jan 27, 2010

Your appointment sounds like it went really well!  Very encouraging, I might add.  Super news that you don't seem to be progressing.  That has to be a big comfort!

Thanks for sharing your recent visit.   It's uplifting to see that there's can be some hopeful experiences with this disease.

1142230 tn?1268675666
by Wendella247, Jan 27, 2010
Quix, I have been advised by my neuro that I should start an injection med--he gave me literature on three--Avonex, Copaxone and Extavia--I've been leaning towards Avonex (as does he), but frankly, I'm pretty freaked out about getting these shots -- my signif. other would give them to me since I have a problem with my right hand and couldn't manage the needle.  He's given many injections to animals (used to breed Arabian horsess), but it still makes me VERY anxious thinking about it.  Plus I've heard there are usually flu-like symptoms.  But it sounds like you preferred it--am I gathering from your reference that it provoked negative thoughts in you?  I am most intrigued by your reference to oral meds?  Are they anticipated in the near future?  Hadn't heard anything along those lines until your post.

By the way, I just posted My Story in my profile, for anyone who wants to know a bit more about me--at least about my diagnosis, etc.

Have a great day!!

559187 tn?1330782856
by Sarahsmom46, Jan 27, 2010
Quix - Wow, that is a lot to digest.  But what good digesting I will do as I read it over again.  I was struck by what he said about the copasone.  My neuro had the same viewpoint, but I was one of those patients that really wanted it so...

I learned a lot from what you shared.  Like your idea about a Health Page with good neuro visit.  Maye we can do one on things we learned from our neuro visits too.

You're the best.  


1179660 tn?1264797913
by doonan, Jan 28, 2010
to   quixotic 1    my husband, has just shown me how to click on to all these extra things , so i know know how to find out more, i will get better,i have too!                                                                                                                            

338416 tn?1420045702
by jensequitur, Jan 28, 2010
Sounds like you found a winner!  That's so reassuring... there are people out there who know what they're doing - we just have to keep looking.

338416 tn?1420045702
by jensequitur, Jan 28, 2010
Although your comment made me a bit nervous - PPMS presenting with leg weakness and spasticity.  Christmas 07 I began having weakness in my right leg, and early last year I started having myoclonus of the back, along with major leg weakness.  I haven't gotten a good MRI of the back yet, but I have to wonder.

Avatar universal
by AtlantaJana, Feb 28, 2010
OMG...I just read your story (profile, I guess) and was blown away.  I learned so much from you and your willingness to share.  God bless you!

Of huge interest to me was the problem with the eyes.  I have noticed that my right eye is much more droopy than my left.  When putting on eye makeup, I can close my left eye with no problem, with my right eye, there is a squinting going on and I cannot even see most of my eyelid.  my vision is changing much more rapidly than expected for someone my age and sometimes water pours out of my right eye if I am straining to see something.  In addition, I was diagnosed with trigeminal neuralgia twelve years ago, about the same time I developed hyper-reflexation, diminished muscle strength bi-laterally, decreased muscle tone (in fact, my right leg is slightly larger than my left for no apparent reason), I have headaches that I never had growing up or even into adulthood.  I feel a type of pressure at the base of my skull most of the time.  I could go on and on about the similarities in our stories.

If I truly have developed this disease, that would make me 43 yo at the onset,as far as I can tell.  I keep really good records and journals (habit of being a legal secretary) so I know exactly when I had what, the docs I have seen, every medicine I have taken, etc.

Any suggestions for me as to where the most concise information may be so I can investigate further?  I am not a hystrionic, nor am I the type of person who develops every illness my friends have, or assume I have a brain tumor because my head hurts.  I really need information at this point and my trust level with most doctors went out the window at about surgery no. 5.

Thanks for all your time and energy you give here.  I am a very new "newbie" but can see you really do care about the people here.

Jana :)

867582 tn?1311627397
by MsWobbles, May 05, 2010

I'm only just now reading this post.  I'm so glad you found another good neuro to help you chart your course through MS waters (and your recent flooding adventures)!  

Had to comment on your wish to perform ballet:  I have had similar longings.  In fact, the last time I went to the ballet, I couldn't help but buy one of the cute little ballerina figures complete with tutu designed to possibly hang from a car mirror.  Mine was there for just a short while (much to my teenage son's embarrassment and disdain) until it plunged to the car floor repeatedly and now has found a home dangling over my work desk.  

What is it about loss of function, inability to move as before, that suddenly pulls us toward ballet,soccer etc.?  Now when I see a track team jogging along the road in practice it makes me so envious (even though when younger, participating in the President Kennedy Fitness annual school eval I never could make it around a track even once or ever really enjoyed running).  I guess we are drawn to what we lack.  

So you're not alone in wanting that pink tutu!  Me too-too, me tutu!!


Avatar universal
by DragonflyRae, Jun 09, 2010
It sounds  to me like you have been through so very much over the past 11 yrs. You are a strong woman! I admire your strength and determination. All the testing, all the pain, frustration.... all the switching of Neurologists - Dead Ends.... starting over. It sounds to me like you've finally landed yourself a very good Neuro who is patient, concerned, caring, confident and who listens. So very important.

I have an MRI scheduled in a week and a half - My MS testing begins.....

I'm scared :/


Avatar universal
by jeanigirl, Jul 04, 2012
Hi,Im jeanigirl....can soneone tell me what PPMS is

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