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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
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
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