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Tempering Hope
I was chatting with Nancy about my upcoming MS center neurologist visit, and she encouraged me to temper my hope. LOL. True, doctors have done a doozy on many of us, myself included. But hope springs eternally in me!
My hope is that I will have a meaningful discussion about DMDs and leave with a prescription/plan to get on one. I also hope to get appropriate referrals for related professionals (PT, etc.).
My hope is that he will take me seriously. He is young and at a place where they preach the clinical-radiological paradox, so he should. And I think I meet the darn McDonald criteria. But of course, you never know.
So I will let you all know tomorrow if he is going to help me... or if he crushed my spirit.
How do you keep hope despite discouraging doctor visits? Or *do* you keep hope?
My hope is that I will have a meaningful discussion about DMDs and leave with a prescription/plan to get on one. I also hope to get appropriate referrals for related professionals (PT, etc.).
My hope is that he will take me seriously. He is young and at a place where they preach the clinical-radiological paradox, so he should. And I think I meet the darn McDonald criteria. But of course, you never know.
So I will let you all know tomorrow if he is going to help me... or if he crushed my spirit.
How do you keep hope despite discouraging doctor visits? Or *do* you keep hope?
So true, DV, I have lots of people willing to hold my hand. What I need in a doctor is willingness to makes sure I can feel my hand--for many years to come.
My thoughts exactly on the study. No downside, really. I would be on a DMD, have free MRIs, and be followed pretty closely. Sign me up! I am leaning toward the estrogen one until I learn more about the -mab one.
Nancy, I sure hope he will be the one for me. Ahh, aren't we all looking for "the one?" ;)
I forgot to mention that this doc thinks I have RRMS. He does not think it has been one long flare since May. He thinks it has been two or possibly three attacks in a row. Because I had new symptoms show up at a certain point, then worsening at another point.
Buffy, it seems like it is hard to keep hope when our spirits are beaten down so many times. But I guess that if we have no hope, we will have no help. Giving up solves nothing, and going into an appointment expecting to be disappointed might turn out to be a self-fulfilling prophecy. I am the same as you--I can't seem to help having hope again.
My thoughts exactly on the study. No downside, really. I would be on a DMD, have free MRIs, and be followed pretty closely. Sign me up! I am leaning toward the estrogen one until I learn more about the -mab one.
Nancy, I sure hope he will be the one for me. Ahh, aren't we all looking for "the one?" ;)
I forgot to mention that this doc thinks I have RRMS. He does not think it has been one long flare since May. He thinks it has been two or possibly three attacks in a row. Because I had new symptoms show up at a certain point, then worsening at another point.
Buffy, it seems like it is hard to keep hope when our spirits are beaten down so many times. But I guess that if we have no hope, we will have no help. Giving up solves nothing, and going into an appointment expecting to be disappointed might turn out to be a self-fulfilling prophecy. I am the same as you--I can't seem to help having hope again.
Hi BC. Glad your appointment seemed to go well enough, except of course for the surprise of his not having your records--it seems like every doctor's visit has got to have SOME surprise or other! :)
Sounds like he is on the same page with you about your diagnosis and getting on a DMD. I hope all goes well for you from here. The most important thing about a doctor is not whether they care about you personally, but whether they care about GETTING THINGS RIGHT for you. Sounds like yours will likely be OK in that department!
Good luck,
Nancy
Sounds like he is on the same page with you about your diagnosis and getting on a DMD. I hope all goes well for you from here. The most important thing about a doctor is not whether they care about you personally, but whether they care about GETTING THINGS RIGHT for you. Sounds like yours will likely be OK in that department!
Good luck,
Nancy
Sorry I didn't see your post before the apt. Hope it works out well (and as quickly as possible).
As for hope... I think hope is sometimes all that we must have (even tempered sometimes). Yes, it means that we can be disappointed. It means frustration and even more heartache. However, and this may be completely off for others, for me hope is belief in myself... for as long as possible. My faith is shaken but not gone. I can't seem to help it... and I wish the same for everyone always.
As for hope... I think hope is sometimes all that we must have (even tempered sometimes). Yes, it means that we can be disappointed. It means frustration and even more heartache. However, and this may be completely off for others, for me hope is belief in myself... for as long as possible. My faith is shaken but not gone. I can't seem to help it... and I wish the same for everyone always.
Sounds like a productive appt. It suckks that this office didn't have all your records. Consider getting copies of everything including your MRIs on CD and bring then to appts as a backup. This has come in handy for me when one of the neuros I saw early on didn't have my complete file.
He sounds like he's doing the right things. His perspective on the oral meds and Tysabri meds is interesting. Sounds like his thinking his correct...start on the lesser risk meds unless there is a need to be more aggressive. The studies also sound interesting, and worth considering especially in neither case would you potentially be on placebo only, so you'd have the benefit of treatment plus the opportunity to contribute to the overall body of knowledge on MS. Plus I expect you'd get closer attention and follow up than if not in a study.
I laughed at your description of this guy, he sounds just like mine with the flat affect. Mine is just like that, with a very bland personality, but he seems to really know his stuff so I don't mind at all. There are other people in my life who'll hold my hand when I need it, as I expect there are in yours. The most important thing is that he ensures you get the attention, follow up and care you need, and it sounds like he is doing just that. Which is a very good thing! I hope that you keep us posted on your progress.
He sounds like he's doing the right things. His perspective on the oral meds and Tysabri meds is interesting. Sounds like his thinking his correct...start on the lesser risk meds unless there is a need to be more aggressive. The studies also sound interesting, and worth considering especially in neither case would you potentially be on placebo only, so you'd have the benefit of treatment plus the opportunity to contribute to the overall body of knowledge on MS. Plus I expect you'd get closer attention and follow up than if not in a study.
I laughed at your description of this guy, he sounds just like mine with the flat affect. Mine is just like that, with a very bland personality, but he seems to really know his stuff so I don't mind at all. There are other people in my life who'll hold my hand when I need it, as I expect there are in yours. The most important thing is that he ensures you get the attention, follow up and care you need, and it sounds like he is doing just that. Which is a very good thing! I hope that you keep us posted on your progress.
Well, well, well...
Thank you all for the comments. The self advocacy thing is something that I really need to work on. And having a clear reason for why I am at the appointment--verbalizing it.
I was pretty nervous right before the appointment. I was considering whether he might be nice... might be rude... might be Aspergery (which I am fine with)... might say it's in my head... might be ready to put me on a DMD tomorrow...
What I was NOT ready for was that he would know nothing about me when I came in! It probably worked in my favor, given what my other neuros might have put in my file, lol.
Apparently my paperwork and MRI discs were misplaced. Maybe because my original appointment was with a different doc, and I was switched to this one to get me in earlier (a 6-week wait was considered fast tracking).
So I had to tell him everything from the beginning. He examined me--I would not say that it was the most in-depth ever. But it covered all the bases.
I think he is not the kind of guy who is going to hold your hand or consider your feelings, but not because he does not care--because it does not occur to him that you have feelings. Spectrumy. Totally flat affect. I am cool with that, if he is a good doctor.
He did not tell me anything that he saw or thought until I asked... So... What did you see in my eyes? Oh, bilateral pallor. Well, thanks for telling me!
We will have a talk about that next time, if it happens again.
He saw the same stuff as my internist: left sided weakness, balance issues, sensory stuff. Nice to have that corroboration when he had not seen the internist's report.
He wants to look at my MRIs and then get back to me. He did not seem deterred by the fact that my CSF was negative (which I told him--again, he did not have my packet). I asked if I need to have another MRI of my spine, since the first one blew. He said possibly not, that my brain MRI might be enough. He can treat the symptoms of spine lesions without seeing them.
He was ready to be done then, but I let him know that I had waited a long time for this appointment, and it's kind of not my fault that someone misplaced my packet. Let's talk DMDs.
He is a fan of the CRABs for their safety record. They are not going to kill anybody. He tried to steer me away from Gilenya or Tysabri but would consider them if I really, really wanted them. We talked about the pros and cons of the different drugs.
He said I might be a candidate for two clinical trials another doctor there is conducting.
One is where some people get copaxone and estriol, while others get copaxone and a placebo.
The other trial is for a new drug similar to Tysabri but apparently safer. In this trial, some people get avonex and a once-weekly injectable drug that ends with -mab. I forget which one. I looked on their website, and they are trialing rituximab, ocrelizumab, and daclizumab--I think he mentioned daclizumab to me? Anyway, the control group will get avonex and a placebo injection.
He put in for the secretary of the doctor doing the clinical trials to call me. And he will let me know what he thinks of my MRIs, the bloodwork he ordered, and the urine test. Checking out D and calcium stuff.
I went into this kind of down on the CRABs and thinking I wanted Tysabri. But now I think I want to be involved in one of the drug trials. It sure is nice to have options, but deciding what to do is difficult.
He is supposed to call me next week with the results of the blood, urine, and MRI review. You had better believe I will be on the phone if I do not hear from him! ;)
Thank you all for the comments. The self advocacy thing is something that I really need to work on. And having a clear reason for why I am at the appointment--verbalizing it.
I was pretty nervous right before the appointment. I was considering whether he might be nice... might be rude... might be Aspergery (which I am fine with)... might say it's in my head... might be ready to put me on a DMD tomorrow...
What I was NOT ready for was that he would know nothing about me when I came in! It probably worked in my favor, given what my other neuros might have put in my file, lol.
Apparently my paperwork and MRI discs were misplaced. Maybe because my original appointment was with a different doc, and I was switched to this one to get me in earlier (a 6-week wait was considered fast tracking).
So I had to tell him everything from the beginning. He examined me--I would not say that it was the most in-depth ever. But it covered all the bases.
I think he is not the kind of guy who is going to hold your hand or consider your feelings, but not because he does not care--because it does not occur to him that you have feelings. Spectrumy. Totally flat affect. I am cool with that, if he is a good doctor.
He did not tell me anything that he saw or thought until I asked... So... What did you see in my eyes? Oh, bilateral pallor. Well, thanks for telling me!
We will have a talk about that next time, if it happens again.
He saw the same stuff as my internist: left sided weakness, balance issues, sensory stuff. Nice to have that corroboration when he had not seen the internist's report.
He wants to look at my MRIs and then get back to me. He did not seem deterred by the fact that my CSF was negative (which I told him--again, he did not have my packet). I asked if I need to have another MRI of my spine, since the first one blew. He said possibly not, that my brain MRI might be enough. He can treat the symptoms of spine lesions without seeing them.
He was ready to be done then, but I let him know that I had waited a long time for this appointment, and it's kind of not my fault that someone misplaced my packet. Let's talk DMDs.
He is a fan of the CRABs for their safety record. They are not going to kill anybody. He tried to steer me away from Gilenya or Tysabri but would consider them if I really, really wanted them. We talked about the pros and cons of the different drugs.
He said I might be a candidate for two clinical trials another doctor there is conducting.
One is where some people get copaxone and estriol, while others get copaxone and a placebo.
The other trial is for a new drug similar to Tysabri but apparently safer. In this trial, some people get avonex and a once-weekly injectable drug that ends with -mab. I forget which one. I looked on their website, and they are trialing rituximab, ocrelizumab, and daclizumab--I think he mentioned daclizumab to me? Anyway, the control group will get avonex and a placebo injection.
He put in for the secretary of the doctor doing the clinical trials to call me. And he will let me know what he thinks of my MRIs, the bloodwork he ordered, and the urine test. Checking out D and calcium stuff.
I went into this kind of down on the CRABs and thinking I wanted Tysabri. But now I think I want to be involved in one of the drug trials. It sure is nice to have options, but deciding what to do is difficult.
He is supposed to call me next week with the results of the blood, urine, and MRI review. You had better believe I will be on the phone if I do not hear from him! ;)
I took this self advocacy course last week end. It is helping me to decide what I need and say to the health professional. This is my problem is there anyway you can help me solve it? Being clear what my objective is, keeping expectations reasonable for one visit, and keeping my emotions out of it ( hard part for me). Also active listening for me. Not thinking of what I am going to say next and not hearing to Doctor. At the end making sure if my problem was not solved being clear about why it can't be solved.
Alex
Alex
>>How do you keep hope despite discouraging doctor visits? Or *do* you keep hope?
i have none with regards to VA neuro's and most of the VA in general -- with regards to my journey with them and MS diagnosis/treatment.
my civilian neuro's have all been good. the documentation was overwhelming so they never have treated me but with respect and help.
i see a shrink for anger issues related to the MS diagnosis journey and the strange denial from VA doctors as to anything actually being wrong health wise.
you have way more hope regarding neuro's than i do. wait till you get federal health care rationing systems.
keep the hope for as long as you can, it is good medicine for the soul
i have none with regards to VA neuro's and most of the VA in general -- with regards to my journey with them and MS diagnosis/treatment.
my civilian neuro's have all been good. the documentation was overwhelming so they never have treated me but with respect and help.
i see a shrink for anger issues related to the MS diagnosis journey and the strange denial from VA doctors as to anything actually being wrong health wise.
you have way more hope regarding neuro's than i do. wait till you get federal health care rationing systems.
keep the hope for as long as you can, it is good medicine for the soul
Hi BC--After reading your last post in the other forum, I think I was a bit too much of a wet blanket--it sounds like your diagnosis and the evidence for it are a lot more solid than I somehow had it in my head. Anyway, it sounds like you're seeing the kind of doctor who will indeed take a patient seriously.
I think DV's idea of forming a clear idea of what you want/need from a doctor's visit--and what to do if things don't go as expected--are spot-on.
I hope you find yourself on a DMD soon and on your way to a more hopeful and manageable future! Good luck tomorrow. :)
Nancy
I think DV's idea of forming a clear idea of what you want/need from a doctor's visit--and what to do if things don't go as expected--are spot-on.
I hope you find yourself on a DMD soon and on your way to a more hopeful and manageable future! Good luck tomorrow. :)
Nancy
We'll be waiting for the report tomorrow - I hope it goes well and you are pleased with the appointment.
I like DV's idea about not making a decision after just one visit. I didn't like my neuro after the first time either, but something told me to stick it out one more go-round. I'm so glad I did.
good luck, Lu
I like DV's idea about not making a decision after just one visit. I didn't like my neuro after the first time either, but something told me to stick it out one more go-round. I'm so glad I did.
good luck, Lu
I agree with the advice re: tempering hope.....and maybe it's just semantics, but I tend to think of it more in terms of managing my expectations. For me, to 'hope' seems passive, like it's putting too much outside of my control, hoping that this doc or that will do this or that for me. Instead I ensure I'm clear in my own head on what I am expecting to come out of a consultation, and I convey my expectations to my doc. If the doc doesn't meet my expectations, I need to evaluate whether or not they were realistic ones to begin with. If they were, this may not be the doc for me. But I don't drop them after one visit; sometimes it takes a while to develop a rapport and to get a better sense of how they may be able to help.
Good luck tomorrow, and remember, he can't crush your spirit unless you let him. Look forward to hearing how things went.
Good luck tomorrow, and remember, he can't crush your spirit unless you let him. Look forward to hearing how things went.
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