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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
Mary - You asked about denervation and I didn't have a good answer for you until today. I saw my ortho for the last time and told him about the marked atrophy of my right calf and the frequent bouts of fasciculations. I asked him if the atrophy of disuse was usually asociated with fasciculations. He said that it wasn't. So, I said, "Denervation?" and he nodded solemnly.
So, in the context of rapid aptrophy, localized fasciculation in the involved muscle group do indicate a loss of motor nerve signals to that muscle. Simple disuse apparently is not as commonly associated with localized fasciculations.
I saw this cautiously because we see so many people here who have widespread fasciculations and are worried about ALS. Uniformly, though, they have no weakness or atrophy.
The implication here is that I either suffered damage to the nerve during my injury (ortho didn't tink so, given the mechanism of my injury) or it is a coincidence and is an effect of my MS.
Final point to take home is that frequent localized fasciculations in a muscle group that is weak and disapearing is most likely due to loss of the nerve signal - either peripherally (not MS) or centrally (like in MS) and not just from disuse.
Quix
So, in the context of rapid aptrophy, localized fasciculation in the involved muscle group do indicate a loss of motor nerve signals to that muscle. Simple disuse apparently is not as commonly associated with localized fasciculations.
I saw this cautiously because we see so many people here who have widespread fasciculations and are worried about ALS. Uniformly, though, they have no weakness or atrophy.
The implication here is that I either suffered damage to the nerve during my injury (ortho didn't tink so, given the mechanism of my injury) or it is a coincidence and is an effect of my MS.
Final point to take home is that frequent localized fasciculations in a muscle group that is weak and disapearing is most likely due to loss of the nerve signal - either peripherally (not MS) or centrally (like in MS) and not just from disuse.
Quix
I'm smiling for you Doc Q! This is such good news on many fronts. I would be curious to hear his thoughts on the oral meds. I've yet to hear them endorsed locally due to the potential side affects, which sound far worse than current DMDs.
Feeling stronger is so empowering. I felt that during house demo this summer and I've relied on it since then when feeling badly.
Let me know if your successful w/that origami, lol too funny. If so, I want the brain one.
-shell
Feeling stronger is so empowering. I felt that during house demo this summer and I've relied on it since then when feeling badly.
Let me know if your successful w/that origami, lol too funny. If so, I want the brain one.
-shell
During my first appt. with my present neuro, he also said that maybe MS is just a category, not a single disease.
The more I read here, the more I think that's likely to be true. It's possible that those of us who reach out in cyberspace to find answers are those who just don't fit into the little boxes medical science has established. I understand why they do that, but if doctors can't think beyond this, no wonder we need limboland.
ess
The more I read here, the more I think that's likely to be true. It's possible that those of us who reach out in cyberspace to find answers are those who just don't fit into the little boxes medical science has established. I understand why they do that, but if doctors can't think beyond this, no wonder we need limboland.
ess
That's fantastic! So maybe you've got SPRMPPMS... ;-) So you've decided not to take Copaxone? Let us know what the neuro says - I just got back on it, with full financial assistance and the applause of my neuro.
Thanks everyone.
Jen - you know, that I have always felt that my course acted more like PPMS, but now I have to say that I have improved - not just stabilized - in several symptoms - right arm weakness, right leg weakness, Trigeminal Neuralgia.
And, I will talk to the orthopod next week when I expect to be cleared for gratuitous walking if PT might help the atrophy.
Ren - the Slumber Party is still on. All we need is two or more people to let me know when they can come. You all can come one by one, too, but then it is a sleep over. For the men. Down't worry about braiding hair. We can also braid beards or give facials. Or exfoliate together.
Where is that hilarious post about the cold-waxing and hot bathtub???
Quix
Jen - you know, that I have always felt that my course acted more like PPMS, but now I have to say that I have improved - not just stabilized - in several symptoms - right arm weakness, right leg weakness, Trigeminal Neuralgia.
And, I will talk to the orthopod next week when I expect to be cleared for gratuitous walking if PT might help the atrophy.
Ren - the Slumber Party is still on. All we need is two or more people to let me know when they can come. You all can come one by one, too, but then it is a sleep over. For the men. Down't worry about braiding hair. We can also braid beards or give facials. Or exfoliate together.
Where is that hilarious post about the cold-waxing and hot bathtub???
Quix
Quix,
Wonderful news for you!!! It truly sounds like you have a wonderful neurologist. I am jealous. I wish it was my neuro too....
Keep up the great work.....
Thanks for all the info....
terri
Wonderful news for you!!! It truly sounds like you have a wonderful neurologist. I am jealous. I wish it was my neuro too....
Keep up the great work.....
Thanks for all the info....
terri
Whose neuro was it that was saying that MS is really just a big grab-bag, and all the different categories we're trying to fit it into are really arbitrary?
Quix, to me it sounds like a form of PPMS, but with remission. Is there anything that can be done about the atrophy of the leg? Like a TENS unit or something?
I'm glad to hear you're feeling better!
Quix, to me it sounds like a form of PPMS, but with remission. Is there anything that can be done about the atrophy of the leg? Like a TENS unit or something?
I'm glad to hear you're feeling better!
Congratulations to you Quix!! Improving health and losing weight!! You go girl!
red
red
So glad to hear that you are doing better in alot of ways. I know that you are no longer taking Avonex and am pleased to hear of your continued improvement and actually a reduction in lesions.
When I took Avonex for several years, then came off of it, I believe that the Avonex was responsible for my lack of an relapses and some improvement on MRI. I believe it was the Avonex and don't care if the doctor's think otherwise. Avonex and it's side effects can be hard on some of us, but I still think it's an excellent drug in the fight against MS and it's progression.
I, too, am not on any DMD now and know that I am taking a risk with further progression of the MS. I'll take my chances, although I know that I indeed have progressed. I have gotten NO real exercise this entire summer, because I have spent the season inside. I just can't take those 90 to almost 100 degree days. Can't do it and won't do it.
Sounds like your ankle is healing well and you'll be able to kick some "aspirin" soon, when other's need help with their idiot Neuro's. The bon fires aren't working. I think that most of them are due for an "aspirin" kicking. Maybe the whole foot up the aspirin would be better.
Big Smiles and Big Healing Hugs sent your way, Quizzle sticks....We love you, precious one.
Heather
When I took Avonex for several years, then came off of it, I believe that the Avonex was responsible for my lack of an relapses and some improvement on MRI. I believe it was the Avonex and don't care if the doctor's think otherwise. Avonex and it's side effects can be hard on some of us, but I still think it's an excellent drug in the fight against MS and it's progression.
I, too, am not on any DMD now and know that I am taking a risk with further progression of the MS. I'll take my chances, although I know that I indeed have progressed. I have gotten NO real exercise this entire summer, because I have spent the season inside. I just can't take those 90 to almost 100 degree days. Can't do it and won't do it.
Sounds like your ankle is healing well and you'll be able to kick some "aspirin" soon, when other's need help with their idiot Neuro's. The bon fires aren't working. I think that most of them are due for an "aspirin" kicking. Maybe the whole foot up the aspirin would be better.
Big Smiles and Big Healing Hugs sent your way, Quizzle sticks....We love you, precious one.
Heather
Quix,
I am happy for the positive news, and congrats on losing weight if it makes you feel better! I also join the group in wishing you continuous recovery.
Pablo
I am happy for the positive news, and congrats on losing weight if it makes you feel better! I also join the group in wishing you continuous recovery.
Pablo
quix,
so delighted to read all of the good things happening for you!
hope the swelling goes away soon....
xo michelle
so delighted to read all of the good things happening for you!
hope the swelling goes away soon....
xo michelle
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 ???? :-) )
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 ???? :-) )
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!
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!
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
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
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
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
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
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
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
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
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
What good news to hear. We sure learn a lot from each other's doctor appointments. I like your neuro, Dr. C. He seems like a guy who wants to empower her patients by making you part of the team as it should be.
I'd love to see a doctor do the "snoopy dance". Congratulations on losing the 8 pounds. That is really significant in my book. How are you doing it because I know you like chocolate and my favorite, choco chip mint ice cream. :)
Julie
I'd love to see a doctor do the "snoopy dance". Congratulations on losing the 8 pounds. That is really significant in my book. How are you doing it because I know you like chocolate and my favorite, choco chip mint ice cream. :)
Julie
Can you tell us more about this denervation when you have a few minutes Quix? I noticed quite a few years ago that my right leg was smaller than the left by half to a full inch diameter even though it is the dominant one. I had figured this happened because of the knee joint problems and maybe I wasn't bearing as much weight on it over time. Now fully rehabbed two years after knee replacement and it's still smaller with the calf exactly as you described. I've given up on it ever being restored but haven't had a real clue why it's that way.
So glad the improvement is real and measurable. Now you'll just have to pace yourself as you begin to move about more. Use those spoons judiciously to keep what you've got.
The leg is still swollen? That's actually good news for your weight loss goal! Since water weighs eight pounds a gallon, you could drop a few more easy pounds once you're moving around a little. Start walking >> mobilize fluid >> convert to urine >> store in bladder >> self-cath >> get on scale >> celebrate!
Mary
So glad the improvement is real and measurable. Now you'll just have to pace yourself as you begin to move about more. Use those spoons judiciously to keep what you've got.
The leg is still swollen? That's actually good news for your weight loss goal! Since water weighs eight pounds a gallon, you could drop a few more easy pounds once you're moving around a little. Start walking >> mobilize fluid >> convert to urine >> store in bladder >> self-cath >> get on scale >> celebrate!
Mary
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