Aa
Back from Boston, Pt 1
Hi All!
I’m back from the U.S. I had a great trip to Boston and Philadelphia and a very informative neuro consult at the MS Clinic at Brigham. It was a worthwhile visit and I’m glad I had the opportunity to get a second opinion at a leading facility for MS. I didn’t seek it out because I am unhappy with my neuro here in Alberta; in fact I do think he is quite good, esp when I read so many evil neuro horror stories here!
Rather, I have been ambivalent about my doc’s suggested next step (Novantrone) should my MS remain as active as it has been in this past year, and mainly I wanted to know Brigham’s position on the use of Novantrone vs Tysabri in cases of early, aggressive MS like mine. I figured, the more info I can get from the experts, the better equipped I will be, when/if I have to make a decision about another change in treatment.
Generally, I was reassured by the fact that this neuro was in agreement with most of what’s happened in my case thus far. He did however make some additional recommendations that I will discuss with my neuro in September.
Here are some of the key similarities and differences between the advice given by the Brigham doc and my regular neuro. This is going to be a long post…sorry about that!
*Brigham doc agrees with my neuro’s description of my MS as ‘active’ / ‘aggressive’, given the frequency of my attacks so early in disease; and also b/c of the degree of brainstem involvement and c-spine involvement.
*Brigham doc agrees with my neuro’s opinion that I also have t-spine involvement, given my symptoms last fall (location of my MS hug), even though my t-spine MRI didn’t show any lesions.
*Brigham doc was satisfied that my MRIs are being done appropriately. This was reassuring, since I live in a small, pretty remote city and wasn’t sure whether I was getting quality imaging. I FORGOT to ask him his opinion about contrast dye. I’m so annoyed I forgot this because there seems to be so much variance in opinion regarding when it should be used.
*Brigham doc agrees with my current treatment plan of Copaxone, and indicated that if I were to have another relapse after being on it for at least two months but less than six months, this may be when I ought to consider a more aggressive route – same as what my regular neuro thinks. He said that anecdotally, many patients describe noticing a distinct difference in how they feel overall, after about six months on Copaxone. He seemed confident that I may respond very well, despite how active my MS has been so far.
*Brigham doc recommended follow up MRI be done on brain, c- and t-spine, at six and twelve months after starting Copaxone. I’m pretty sure my own neuro did not think this was necessary, but I’m going with Brigham doc on this one. My regular neuro won’t object, if that is what I want.
*Brigham doc said they rarely prescribe Novantrone, and said, “actually, we HATE that drug” because of its toxicity. He said if a more aggressive course is indicated at some point, he would recommend either Tysabri or rituximab. My neuro has already indicated that Tysabri is an option if need be, but he definitely leans towards Novantrone. I am interested to explore as to why this is, at my next appt.
*Meanwhile, Brigham doc recommended a 3-day course of IV steroids every other month for six months. He felt this would provide a boost to my Copaxone treatment early on. My regular neuro never mentioned such a treatment plan, so I’m also eager to hear his thoughts about it. Brigham doc offered for me to do a 3-day infusion at their clinic while still in Boston, but then realized if I do proceed on this, I ought to do it in Canada so I incur no cost.
*Brigham doc shares my neuro’s reluctance to provide any drug treatment for my fatigue until it is more clear to them that it is truly MS fatigue, as opposed to fatigue as a secondary symptom (ie: might possibly be associated with nerve pain which is disrupting sleep, etc). He indicated that at Brigham, they prefer to conduct a sleep study prior to even considering treating fatigue with drugs.
*Brigham doc agreed with my GP that since I hadn’t noticed much of an improvement with my neuropathic pain after being on Neurontin since Feb (and on max daily dose since June), I should try to gradually wean off it. Also, like my GP, he thinks I should continue with the amitriptyline and titrate as high as 50mg if needed. I’m up to 40mg now and have definitely noticed less burning and stabbing sensations. The incoordination and clumsiness and numbness are all still there. Oh, another thing, Brigham doc says he thinks its an entirely sensory problem, not motor. I haven’t seen my regular neuro since things worsened with my hand, so haven’t gotten his take on this yet.
*Brigham doc was clearly skeptical of my physio treatment and didn’t seem to think that it would help with the neuropathic pain in my left hand. My PT shares the same skepticism. In any event, last month I completed four treatments as my MS clinic nurse suggested (I think she just didn’t know what else to offer) and am no better or worse off for it. At least it is covered by Alberta Health, so I’m not out any money for it.
*Brigham doc did not see an INO when he examined my vision, which my regular neuro saw as recently as in April. Brigham doc stated that it could have been present previously, and now is not clinically detectable due to improvement of symptoms. He indicated that some of the improvement may be due to re-myelination, but more likely is due to brain plasticity, ie: parts of the brain making up for lost function in other parts. Like my regular neuro and my ophtha, he could not provide any prognosis on my double vision, as I expected.
*Brigham doc recommended 1000mg of Vitamin D daily. This is their standard advice, because it may turn out that it actually helps with MS symptoms and/or disease progression. He told me about a study now in Phase III involving Vitamin D; I forgot to ask for specific details. When I told him I’m already on 2000mg per day, he was fine with that. The key difference on this point is that my regular neuro only talked about D when I inquired about it, and his response was that I could take it if I wanted to. He didn’t indicate that he thought this was important, yet at Brigham it is their standard advice. I thought this was an interesting difference between clinics, but not a big issue for me since I have already been taking it for months now.
*Brigham doc was prompt in getting his report to me (one week after my appt). This is consistent with my regular neuro’s timeliness.
*Brigham doc spent about 75 minutes with me (and was looking at his watch near the end of my time with him!), while my regular neuro spends two to three hours with me, and never makes me feel rushed or like I am tying up his time. I was hoping for more time with Brigham neuro to talk more generally about the research the clinic does, but it was clear from his body language when the consult was over.
*Both docs seem very knowledgeable, are both courteous and are good listeners. They are both young, which I have decided I like, since they have been recently trained in the newest science on the disease. My regular neuro is also a professor and a researcher; I forgot to ask Brigham doc, out of curiosity, if he is involved in anything beyond clinical practice. Seven neuros so far, and I have yet to meet an evil one! I know I’m very lucky for that.
....to be continued in Pt 2
I’m back from the U.S. I had a great trip to Boston and Philadelphia and a very informative neuro consult at the MS Clinic at Brigham. It was a worthwhile visit and I’m glad I had the opportunity to get a second opinion at a leading facility for MS. I didn’t seek it out because I am unhappy with my neuro here in Alberta; in fact I do think he is quite good, esp when I read so many evil neuro horror stories here!
Rather, I have been ambivalent about my doc’s suggested next step (Novantrone) should my MS remain as active as it has been in this past year, and mainly I wanted to know Brigham’s position on the use of Novantrone vs Tysabri in cases of early, aggressive MS like mine. I figured, the more info I can get from the experts, the better equipped I will be, when/if I have to make a decision about another change in treatment.
Generally, I was reassured by the fact that this neuro was in agreement with most of what’s happened in my case thus far. He did however make some additional recommendations that I will discuss with my neuro in September.
Here are some of the key similarities and differences between the advice given by the Brigham doc and my regular neuro. This is going to be a long post…sorry about that!
*Brigham doc agrees with my neuro’s description of my MS as ‘active’ / ‘aggressive’, given the frequency of my attacks so early in disease; and also b/c of the degree of brainstem involvement and c-spine involvement.
*Brigham doc agrees with my neuro’s opinion that I also have t-spine involvement, given my symptoms last fall (location of my MS hug), even though my t-spine MRI didn’t show any lesions.
*Brigham doc was satisfied that my MRIs are being done appropriately. This was reassuring, since I live in a small, pretty remote city and wasn’t sure whether I was getting quality imaging. I FORGOT to ask him his opinion about contrast dye. I’m so annoyed I forgot this because there seems to be so much variance in opinion regarding when it should be used.
*Brigham doc agrees with my current treatment plan of Copaxone, and indicated that if I were to have another relapse after being on it for at least two months but less than six months, this may be when I ought to consider a more aggressive route – same as what my regular neuro thinks. He said that anecdotally, many patients describe noticing a distinct difference in how they feel overall, after about six months on Copaxone. He seemed confident that I may respond very well, despite how active my MS has been so far.
*Brigham doc recommended follow up MRI be done on brain, c- and t-spine, at six and twelve months after starting Copaxone. I’m pretty sure my own neuro did not think this was necessary, but I’m going with Brigham doc on this one. My regular neuro won’t object, if that is what I want.
*Brigham doc said they rarely prescribe Novantrone, and said, “actually, we HATE that drug” because of its toxicity. He said if a more aggressive course is indicated at some point, he would recommend either Tysabri or rituximab. My neuro has already indicated that Tysabri is an option if need be, but he definitely leans towards Novantrone. I am interested to explore as to why this is, at my next appt.
*Meanwhile, Brigham doc recommended a 3-day course of IV steroids every other month for six months. He felt this would provide a boost to my Copaxone treatment early on. My regular neuro never mentioned such a treatment plan, so I’m also eager to hear his thoughts about it. Brigham doc offered for me to do a 3-day infusion at their clinic while still in Boston, but then realized if I do proceed on this, I ought to do it in Canada so I incur no cost.
*Brigham doc shares my neuro’s reluctance to provide any drug treatment for my fatigue until it is more clear to them that it is truly MS fatigue, as opposed to fatigue as a secondary symptom (ie: might possibly be associated with nerve pain which is disrupting sleep, etc). He indicated that at Brigham, they prefer to conduct a sleep study prior to even considering treating fatigue with drugs.
*Brigham doc agreed with my GP that since I hadn’t noticed much of an improvement with my neuropathic pain after being on Neurontin since Feb (and on max daily dose since June), I should try to gradually wean off it. Also, like my GP, he thinks I should continue with the amitriptyline and titrate as high as 50mg if needed. I’m up to 40mg now and have definitely noticed less burning and stabbing sensations. The incoordination and clumsiness and numbness are all still there. Oh, another thing, Brigham doc says he thinks its an entirely sensory problem, not motor. I haven’t seen my regular neuro since things worsened with my hand, so haven’t gotten his take on this yet.
*Brigham doc was clearly skeptical of my physio treatment and didn’t seem to think that it would help with the neuropathic pain in my left hand. My PT shares the same skepticism. In any event, last month I completed four treatments as my MS clinic nurse suggested (I think she just didn’t know what else to offer) and am no better or worse off for it. At least it is covered by Alberta Health, so I’m not out any money for it.
*Brigham doc did not see an INO when he examined my vision, which my regular neuro saw as recently as in April. Brigham doc stated that it could have been present previously, and now is not clinically detectable due to improvement of symptoms. He indicated that some of the improvement may be due to re-myelination, but more likely is due to brain plasticity, ie: parts of the brain making up for lost function in other parts. Like my regular neuro and my ophtha, he could not provide any prognosis on my double vision, as I expected.
*Brigham doc recommended 1000mg of Vitamin D daily. This is their standard advice, because it may turn out that it actually helps with MS symptoms and/or disease progression. He told me about a study now in Phase III involving Vitamin D; I forgot to ask for specific details. When I told him I’m already on 2000mg per day, he was fine with that. The key difference on this point is that my regular neuro only talked about D when I inquired about it, and his response was that I could take it if I wanted to. He didn’t indicate that he thought this was important, yet at Brigham it is their standard advice. I thought this was an interesting difference between clinics, but not a big issue for me since I have already been taking it for months now.
*Brigham doc was prompt in getting his report to me (one week after my appt). This is consistent with my regular neuro’s timeliness.
*Brigham doc spent about 75 minutes with me (and was looking at his watch near the end of my time with him!), while my regular neuro spends two to three hours with me, and never makes me feel rushed or like I am tying up his time. I was hoping for more time with Brigham neuro to talk more generally about the research the clinic does, but it was clear from his body language when the consult was over.
*Both docs seem very knowledgeable, are both courteous and are good listeners. They are both young, which I have decided I like, since they have been recently trained in the newest science on the disease. My regular neuro is also a professor and a researcher; I forgot to ask Brigham doc, out of curiosity, if he is involved in anything beyond clinical practice. Seven neuros so far, and I have yet to meet an evil one! I know I’m very lucky for that.
....to be continued in Pt 2
One more thing I forgot to mention, that the talk of Craig going on Copaxone reminded me of (poorly constructed sentence, I know).
Brigham doc said if he or any of his family members were ever diagnosed with RRMS, his treatment of choice would be Copaxone, due to the minimal side effects yet similar efficacy of the other first line treatments.
FYI!
db
Brigham doc said if he or any of his family members were ever diagnosed with RRMS, his treatment of choice would be Copaxone, due to the minimal side effects yet similar efficacy of the other first line treatments.
FYI!
db
Wow! What a wonderful post and a wonderful holiday! This was a great thing for you to do. I can't thank you enough for sharing it in a long post. It was like having the Brigham doc giving us a lecture.
You have brought up many points that we should probably discuss in more detail.
Further reinforcement that "invisible lesions" can cause major symptoms.
More and very important talk about brain plasticity and how it plays a role in all brain damage and especially in MS.
The toxicity of Novantrone vs. Tysabri. I had already come to this same conclusion but have only spelled it out a once.
The standard advice to use Vitamin D, in higher than usually recommended doses.
The advice to thoroughly rule out other treatable causes of fatigue before calling it "MS Fatigue." Especially the importance of a sleep study.
This information about Copaxone and how it works.
The fact that you have found many good neurologists. They really are out there and it is worth our while to search for one that is knowledgeable and who will listen to us, look AT us, and think hard.
Thank you DB! And you had a great holiday to boot! What a bonus!
Quix
You have brought up many points that we should probably discuss in more detail.
Further reinforcement that "invisible lesions" can cause major symptoms.
More and very important talk about brain plasticity and how it plays a role in all brain damage and especially in MS.
The toxicity of Novantrone vs. Tysabri. I had already come to this same conclusion but have only spelled it out a once.
The standard advice to use Vitamin D, in higher than usually recommended doses.
The advice to thoroughly rule out other treatable causes of fatigue before calling it "MS Fatigue." Especially the importance of a sleep study.
This information about Copaxone and how it works.
The fact that you have found many good neurologists. They really are out there and it is worth our while to search for one that is knowledgeable and who will listen to us, look AT us, and think hard.
Thank you DB! And you had a great holiday to boot! What a bonus!
Quix
Nice to see you again! I've read your entire post, and have to say it is amazingly thorough. It's impossible to tell that you had a hard time constructing it. I'm assuming you mean with the typing--the mechanical part. There's certainly no evidence of cog fog, although I don't remember that that ever has been a problem for you anyway.
It does sound as if you got your money's worth, and a lot to think about as well. Hope that it pays dividends when you come to make your next MS decisions.
Glad you enjoyed your trip. Next time try NYC!
ess
It does sound as if you got your money's worth, and a lot to think about as well. Hope that it pays dividends when you come to make your next MS decisions.
Glad you enjoyed your trip. Next time try NYC!
ess
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