What I Learned from My Neuro Last Tuesday

[Quixotic1]

Seeing Dr. C is always something of a revelation.  I always learn something useful.  This last visit was no exception.  As a prelude I have to say that my nosedive into the floor had completely taken my mind off the fact that I have MS.  Since I couldn't do much but sit around I wasn't constantly confronted with my fatigue and weakness.  I even felt that my right hip flexors (my weakest muscles) were stronger - maybe from hauling that boot cast around, though in reality I don't wear it when I am hanging out in my room.

He was dismayed at the injury and very unhappy at the atrophy of my right calf.  I told him about the non-stop fasciculations and he mentioned denervation.  I have always had these really curvy, muscular calves and small ankles - probably my best feature, but now the right one doesn't even show a bulge when I try to contract the gastrocnemius.

He was unhappy about my incontinence.  And he wants to see my self-cath'ing two to three times a day to ensure that my bladder is empty at least that often.  Since I have been on the double dose oxybutinin I have had difficulty emptying and had another bladder infection two weeks ago.  

But, on exam he found that I am improved in two main areas.  My rightward lateral gaze is more stable with less nystagmus.  And my hip flexors are, indeed, stronger.  I afinitely in remission.

My MRI of a couple months ago is unchanged - actually somewhere along the line a couple of spinal lesions have disappeared.

He is now unquestionably sure that I have an atypical course of RRMS.  I have to finally agree even in my heart with this.  The improvement is undeniable.  He still feels that I have very little immune inflammatory activity going on and that is why I hae few relapses, very few lesions, steroids had no effect, and I had only one O-Band.

Since the MRI is better and the exam is improving he is still okay with me off of a DMD - not perfectly okay with it - he says I am taking a definite risk, but he also acknowledges that without the inflammatory component at work I am less likely to respond to the interferons or Copaxone.  He has no respect for Copaxone anyway.  Someday I will pick his brain on why that is.

We discussed the oral meds coming up, at least abstractly.  He thinks that, while they will still be very pricey, that the drug companies will be motivated to offer generous help in getting people onto them.  For the first time there will be real diversity in the mechanisms of action of the available meds.  This translates into market competition.   Before there was either an interferon or Copaxone.  Now, there will be jockeying  to get people onto the meds.  And he will be able to pick a med that would seem to be better for my particular circumstances and lack of inflammation.

I told him that I had weaned off the Tegretol that I had been taking for TN.  I had tried tapering off a couple times in the last two years, but the pain always peeked through.  He said that he didn't have a problem with my doing a trial off of it, but was FIRM in instructing me to dive back onto it if I had even the slightlest glimmer that the pain was returning.  The reason is that he has observed that if you have the pain under control at one dose, then stop the medicine, then have the pain return full force it can be VERY hard to bring the pain under control again.  It might take much higher doses or even addition of another med.  So far I am off of it for four days without a hint.

He still feels that my prognosis is very good.  This reassures me.  

Well, just wanted to share those little points.  Nothing earth shattering, except that he did the Snoopy Dance when I told him I had lost another 8 pounds.   That's 20 in the last year.  Okay, it's not great progress, but it is 20 pounds in the right direction.  Another 80 and I'll be sittin' skinny.

My leg is healing.  It is staying swollen, but no longer hurts.  Just aches deeply sometimes at night.  I'm almost 6 weeks after the attempt to perform origami with my ankle, and I see the orthopod is another 2 weeks.  I'm hoping then to be allowed to begin PT and do some gratuitous walking.

Quix

[rendean]

Sounds like a very positive visit! CONGRATS! on the weight loss especially in light of the immobility!!!

Once again, you have brought and explained to us new info, thank you for always clarifying and intriguing us with more info to make our understanding of this MiSerable disease more in depth.

Next time , please video the doc and the Snoopy dance!!!

Thanks for sharing such a positive visit. It's good to hear good news amongst all the bad reported here on the forum!!!

Continue to follow the doc's orders (that doesn't mean Doc Quix's-it means the doc you pay for his services) and keep on with the weight loss and steady improvements!!!!

Take care of yourself,
Ren

PS guess we missed the slumber party date. When is the next open date ???? :-)  )

[GrannyJo6]

Good news all in all, don't you think? I know it is an amazing feeling to know you are actually getting better! I know I certainly wondered when and if after that exacerbation in April, but here I am! Good job on the weight loss as well!

I love ice cream, too. It is my absolute down fall, especially in the summer. I rationalize it by saying "Well, it is helping to keep my core temp down, and isn't that a good thing?"

Take it easy now!

[Lulu54]

Q- thanks for the thorough update.  Hang in there - you leg will be healded eventually!

I wasn't going to respond to this post, but Sarah's post got my attention and made me sit up straight.....

Cornish Ice Cream sounds wonderful..... clotted cream is a distant cousin of our whipped . It is made with heavy cream and has 60% of so butter fat.  Do I have you yet, Mary?

A couple people at work love to do teas with their British Literature classes and I usually get to have some of the leftovers.  A scone with clotted cream and rasperry jam is certainly a special treat.

Sorry, Q - the ice cream got me distracted!  

Dr. C sounds like he is on top of this and I do want to hear about his dislike of copaxone.

take care, Lulu

[HVAC]

Very informative

Alex

[tarter]

To Quix,

Thanks for sharing your news I'm pleased that your prognosis is looking good.
Keep up the good work with your weight loss and have many pain free days.

Warm Regards Carole

[twopack]

Thanks for the explanations and thanks to Ess for asking.  Lucky for my already too far around waistline that I'm happy with plain royal Earl Grey.  It's obvious these selections are yummy but any food described as CLOTTED leaves a distasteful thought to linger about my tongue buds.  I'll chose to not challenge that with reality and possible temptation should I ever visit my ancestral motherland.

Mary