i'll go with that. cheerio!
I do see why you're confused and feeling down. Why not just take some time to digest the situation without trying to analyze everything, till you can come at it with a fresh approach. When you're ready, do more independent research at good web sites. You'll feel yourself drawn in some direction at that point, so go with that.
Also remember that the VA and the other doc aren't the only 2 neuros out there, regardless of credentials. How 'bout a consult with a third party? Perhaps your new insurance would cover that, at least.
My dad was a lawyer with a penchant for corny Latin phrases, and he liked to say, 'Illegitimi non carborundum'--Don't let the [email protected]
grind you down.
i go off on tangents all the time so no worries here. i'm glad i posted and get some feedback. where else can i do so.
i thought the same too, thought i don't know from where i read ir or heard it, that brain shrinkage relative to last years scan would mean my MS is active in some capacity . one neuro(tec) says yes and one(doom) marked that statement on the mri as false but all the other statements on the mri true. also said one lesion appeared to disappear from last years mri. i didn;t know if neuro trying to say i'm getting better or what.
well, i was told by another neuro at that same place awhile back and another top neuro here that yes, in fact lesions do at times come and go in some patients as seen on their mri's. means, i think ms is active and your body is still fighting.
the other neuro(tec), the one who said i should be on some dmd and listed a few and was waiting on a blood test for another possible dmd mentioned the brain shrinkage thing as, yes that's often a sign they see in some ms patients for sure.
both of these neuros get raves from folks in ms support groups here and the radiologist writes text books on the subject manner used in med schools. just saying they are human but they have darn good credentials and reviews from patients.
there ya go for today, i'll let that sink in a bit. my head is still trying to take all this in. like do is stop seeing the other and just go with the other, ya know. this year after finally getting slightly better insurance, i pay extra for it, i wanted to narrow to one non-VA neuro. sometimes i see another one just to double check. i was hoping for a one-stop place for ms care. but now, i don't know. they are out of network so i may not be able to afford to go anyways. kinda seems odd, this neuro recommended gilenya, last year, i tried it and didn't agree with me, and now? hints at it being mild primary progressive ms vs rrms but wrote rrms in chart.
so i don't know but honestly, you get into a mindset with this disease and now i feel that mindset just got rocked. i don't know how to explain it any other way.
Forgot to add that if your brain has shrunk relative to last year's scan (adjusted for age) then hey, your MS is active and progressing. Brain atrophy is the result of death of cells, which is one problem MS can cause. The other is demyelination. This is not a 'stable' result.
All the more reason to be proactive at this stage.
Hmm. My take on your Dr. Gloom-and-Doom is not good.
He seems to be saying something like, 'Well, why not just curl up and die? It's gonna happen anyway, so let's save ourselves time and trouble and get it over with.' Yeesh. It's not as if you've tried the universe of possibilities and found them all too hard to deal with.
My own neuro (relative new kid on the block with a lot to learn, but learning fast) had a similar attitude back when. He suggested I might as well let sleeping dogs lie, or words to that effect, because my MRIs were stable over several years. Funny, since they weren't. In my March 2015 radiology report, the rad. said something like, 'Small lesion in pons remains unchanged from 2013 scan.' Well boo. Nothing in either '13 or '14 even made mention of a pons lesion. In fact, never has *any* lesion, in maybe 15 years, been identified anywhere but in the upper brain. So I think the new rad. was being diplomatic in chiding the earlier ones.
Meanwhile my neuro was, a year ago, more or less saying that the 2 big relapses I'd had since '13 were simply pseudorelapses, because no new territory (he thought) had been added. He makes up his definitions as he goes along, it seems. But the pons thing could very well account for--and very likely does--new symptoms in the past couple of years.
We've gotta watch these folks, that's for sure. It's all well and good to learn, but I don't want anyone learning at my expense. And this is Hopkins, and this guy was a fellow there before getting his regular appointment.
I see I'm off on a tangent again, but to bring myself back, I'll just say that in your shoes I'd much prefer the 'let's try Tec' doctor to the gloom-and-doom one. What is there to lose? You can always back off, or try something else. And you're only 59! Hardly past callow youth! MS can be depressing enough without all the negativity.
In any case I hope you'll come to a decision on its merits, and not by default, based on a doctor who's kicking you when you're down.
gilenya is the one i had reactions with. i call breathing, increase dizziness and like an increase in anxiety. its taken a few months for the intensity of that to simmer down. to me, it hasn't completely gone away but better than it was.
tec is one the other neuro put on the table. thinks i should be on some dmd. she did say some don't tolerate it well but many do. even if i didn't tolerate it well the neuro said we'd work to find one that did. contrast that with the other one, i didn't do well on that dmd...and its lets stop dmd's since no new activity. and that maybe one of the headache meds is causing balance issues.. gee, most meds for ms symptoms has that listed as one of many possible side effects.
always takes me a few days to digest what is said in a doctors office with hearing and my general makeup. some of it made sense and some of it didn't.
Gosh, U, I don't remember reading anywhere that any of the DMDs have been shown to be less effective or even ineffective in us 'mature ones.' It's the kind of thing I do keep an eye peeled for.
If anyone has good citations on this please pass them along. My neuro had no probs starting me on Tec about a year ago, though he insisted on waiting till I was out of a loooong flare first. I wanted to be on one of the orals, and he and another neuro cautioned against Gilenya for me in view of some open questions about possible cardiac implications with that one. Otherwise I could pick for myself.
Of course Tec took some getting used to, with digestive issues once I got to the full dosage level. So I was backed off and restarted much more slowly, with great results in terms of tolerance. May as well be taking a vitamin, side effects-wise. My last MRIs (early this month) were stable, and I haven't been in a new relapse.
Ultimately the decision of whether or not to try a new DMD is a personal one. For me, I didn't want to have to kick myself around the block for not doing all I can, even if I'd have to go through a break-in period or more than one, to find the right drug.
If your neuro is discouraging you just on general principles, ask for some hard data. If it's just his bias, I think you should be able to experiment for yourself and draw your own conclusions.
Let us know what happens.
thanks for reply. yeah i'm not too worried about it. i'm 59, still have ms and sorta thought it was connected. no new lesions for awhile which is great. but i still have symptoms that dont go away. some trouble (my perspective) at times with mid sentence stopping because i go blank trying to find the next word.
one neuro wants to wait to start up another dmd, if even starting one due to me and my ms may not benefit from it at my age, nature of ms, makes me sicker-reactions, etc, and another ms who thinks i need to be on one. and the mri with brian shrinkage was just one reason of a few.
here i am again asking questions. i was so happy when i got my first dmd cuz i felt it might help with symptoms and i had a tangible thing to fight with so to speak. now to suggest no dmd, sorta blindsided me but i see the logic. and the last reactions i had with one dmd i don't want to repeat that. i still have some residuals from that. residuals i consider bothersome but a doctor that can't feel it may not see that 'bothersome', ya know?
we can still type on the computer so i guess if our brains shrunk a bit who cares, right? appreciate helping put things in perspective.
Yes, brain atrophy is pretty common in MS, and my last 4 or 5 brain MRIs have shown this. My ventricular spaces are corresponding larger, and so on. I'm not sure how they measure all this, but they do have scientific ways of doing it, and to say what's normal for age and what's beyond that. I fit in the 'beyond' stage, and this is mainly what clinched the diagnosis. I have a big lesion load in the right locales, but since they all sort of run together in masses, they are not 'specific' enough to be classic.Nevertheless, MS it is
We do have to keep in mind that everyone's brain shrinks with age, so it's really more a question of how much is too much. Mine is global, so pretty evenly distributed or maybe undistributed :-)... Thus far I nevertheless have retain most of my aggots, it seems, and I don't have much in the way of cognitive decline, or at least I've got everyone fooled pretty well. Occasional stumbling with word recall (nouns, for some reason), but I think this is par for the course for someone now old. I could be Methusaleh's grandmother!
So no big deal, right?