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What I Learned from My Neuro Last Tuesday
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
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
Awesome doctor you have there. I wish we could all find a doctor that would be so into his/her patients like yours is.
I am so happy that you are doing so well. I pray that it stays this way and you can stop taking the meds for the TN. Four days and no pain that is a pretty good start.
Honestly, not sure how I would feel about cathing myself. Seems it would be difficult. Good luck to you with that.
Kepp up the good work on losing weight. I need to start working on that myself, maybe I will start the weight tracker and see if I can make it work for me.
Paula
I am so happy that you are doing so well. I pray that it stays this way and you can stop taking the meds for the TN. Four days and no pain that is a pretty good start.
Honestly, not sure how I would feel about cathing myself. Seems it would be difficult. Good luck to you with that.
Kepp up the good work on losing weight. I need to start working on that myself, maybe I will start the weight tracker and see if I can make it work for me.
Paula
I am very impressed with you having lost weight and I disagree as I think 8lbs is a lot when added to your total. I have found it difficult to lose weight but was making progress before holiday and with increased sexercise thrown in.. (this was a genuine typo but I thought I wd leave it in as it made me laugh after comments from my previous posts!)
I have not updated my weight trackers as I am fairly sure I have put weight back on now having been on holiday with additional drink, good food, Cornish ice cream and cream teas...I just know that I will have undone all the good.
This wd not be so bad if my husband had not returned from Afghanistan looking like a new lean husband having lost 34 pounds in 5 months from heat, exercise and diet. What is worse is that I am not heavier than him which makes me feel like a blob. So I am guessing I need to refind that motivation and start again.
Well done to you Quix...I feel envious and I love chocolate too.
Love Sarah x
I have not updated my weight trackers as I am fairly sure I have put weight back on now having been on holiday with additional drink, good food, Cornish ice cream and cream teas...I just know that I will have undone all the good.
This wd not be so bad if my husband had not returned from Afghanistan looking like a new lean husband having lost 34 pounds in 5 months from heat, exercise and diet. What is worse is that I am not heavier than him which makes me feel like a blob. So I am guessing I need to refind that motivation and start again.
Well done to you Quix...I feel envious and I love chocolate too.
Love Sarah x
Hey there! All that food sounds so good. Even if you have put weight back on, you still are ahead of the game.
For the benefit of the many non-Brits here, would you describe cream teas? And what's different about Cornish ice cream?
Keep at your 'increased sexercise'!
ess
For the benefit of the many non-Brits here, would you describe cream teas? And what's different about Cornish ice cream?
Keep at your 'increased sexercise'!
ess
Sorry Quix for digressing on your thread but to reply to Ess.....
Cream, cream, and more cream
Cornish ice cream is just the most delicious ice cream and it has clotted cream in it...it is soft, creamy and absolutely scrumdidlyicious (new word...the best I could find). Traditionally if is just plain Cornish Cream flavour (sort of vanilla) but you can also have it in any other flavour in an ice cream cone e.g. chocolate, blackcurrant, strawberry
A Cream tea in Cornwall traditionally involves having a scone or three (although in Cornwall they are also known as Cornish splits) which you put homemade strawberry jam or whatever flavour you like and then a pile of Clotted Cornish Cream. Then you also needs to have some very nice English tea with it.
Perfect heaven if you have a thin small waist and need to put weight on! Alternatively just enjoy and think to hell with it (Much better option!)
Love Sarah x
Cream, cream, and more cream
Cornish ice cream is just the most delicious ice cream and it has clotted cream in it...it is soft, creamy and absolutely scrumdidlyicious (new word...the best I could find). Traditionally if is just plain Cornish Cream flavour (sort of vanilla) but you can also have it in any other flavour in an ice cream cone e.g. chocolate, blackcurrant, strawberry
A Cream tea in Cornwall traditionally involves having a scone or three (although in Cornwall they are also known as Cornish splits) which you put homemade strawberry jam or whatever flavour you like and then a pile of Clotted Cornish Cream. Then you also needs to have some very nice English tea with it.
Perfect heaven if you have a thin small waist and need to put weight on! Alternatively just enjoy and think to hell with it (Much better option!)
Love Sarah x
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
Mary
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