How honest is your neurologist about your prognosis?

[Mable]

Related to some of my recent threads, how honest have your neurologists been with you about your prognosis? Do they ever say, "Not looking good, better get ready for a difficult rest of your life..." Or are they always telling you everything is just fine?

Nobody ever says to me "MS is a chronic progressive disease" (as Jules A. reminds me), instead they say I'm good. Even as my brain atrophy looks terrible.

What's been your experience? Should we trust these doctors to tell us what they really think?

[KoKo]

Related to some of my recent threads, how honest have your neurologists been with you about your prognosis? Do they ever say, "Not looking good, better get ready for a difficult rest of your life..." Or are they always telling you everything is just fine?

Nobody ever says to me "MS is a chronic progressive disease" (as Jules A. reminds me), instead they say I'm good. Even as my brain atrophy looks terrible.

What's been your experience? Should we trust these doctors to tell us what they really think?

Hi Mable

My neuro doesn't really discuss prognosis with me, although he did encourage me early on, at every appointment, to retire on disability sooner than I was ready for it.

He has referred me to the Mellen Center for MS a few times over the years, to be seen by their neuros.

And they were very open and frank with me about my MS progression.

I guess it depends on the neuro.

Take Care

[Marco]

My neurologist is very conservative and measured in all of his comments so he'll never bring up the unknown. My neurologist doesn't discuss it unless I bring it up. We only discuss it when I bring it up in the course of treatment planning.

For example; I wanted to reduce the amount of solumedrol administered before infusions and declining gadolinium for my MRIs.

He agreed to both although he would like me to occasionally get gadolinium, but not every MRI. (Note: I am limited to only 30 minutes of MRI time per session so I would be getting gadolinium a minimum of 3 times per year). No thank you.

[Temagami]

Are you open to sharing why there is a limitation on your MRI time? I ask b/c I´ve never gotten an MRI done in that window of time.

[Marco]

Are you open to sharing why there is a limitation on your MRI time? I ask b/c I´ve never gotten an MRI done in that window of time.

I have an implant that has a restriction of 30 minutes of MRI time per session. It wasn't like that when I first got the implant, but they changed the restrictions 2 years ago. So instead of getting brain, cervical, thoracic in one run, then repeated with contrast it I now have to get each one separately. It sucks ... royally!

[hsmaldo]

My original neuro who diagnosed me and who I have seen for the last 5 years was not willing to say either way. I am a person who wants to plan, so it was originally hard for me when he told me that the plan (when I asked) was to keep me happy, healthy and active for as long as possible.

It's certainly not a prognosis, but to me, after the initial thought of "that's not what I meant when I was talking about a plan!" it was an indicator that we would take things as they come and treat/change as needed.

I personally like that I haven't been given a prognosis, because honestly, as other people have said, your MS is quiet or benign until it's not. The drs really can't give you a prognosis (especially early on) so for one to do so is kind of like them just telling you something they think you want to hear (or trying to cover their butts if it all goes south).

So my dr has always kept it to, things are looking good for now--with us both knowing that a flare could change all that at any time.

I'm not sure about my new neuro--his partner--I've only seen him once so far, but I didn't press him for a prognosis.

[MMMMS]

Very honest. He tells it like it is and listens carefully.

But the truth is that any prognosis is a guess. True with cancer. More so with MS.

The truth is that they can tell you how you are now and what statistics say about the group. Statistics don't apply individually. That's the truth that makes us crazy.

Related to some of my recent threads, how honest have your neurologists been with you about your prognosis? Do they ever say, "Not looking good, better get ready for a difficult rest of your life..." Or are they always telling you everything is just fine?

Nobody ever says to me "MS is a chronic progressive disease" (as Jules A. reminds me), instead they say I'm good. Even as my brain atrophy looks terrible.

What's been your experience? Should we trust these doctors to tell us what they really think?

[Mamabug]

Related to some of my recent threads, how honest have your neurologists been with you about your prognosis? Do they ever say, "Not looking good, better get ready for a difficult rest of your life..."
...
What's been your experience? Should we trust these doctors to tell us what they really think?

My MS specialist is pretty good about answering my questions. I don't think I've specifically asked, "What is my prognosis?".

She orders an MRI once every five years; she compares it to previous ones, tells me where the lesions are, etc.

Following her regular neurological testing, she will also compare where I am with where I was last time.

About a year ago, when I asked her if I was still RRMS or now SPMS, she said I was borderline -- moving into SPMS.
- She answers questions about meds.

She also states her opinion about what she believes:
- A number of years ago, when I asked her to Rx Ldn, she said she'd reluctantly agreed, once, to do that for a patient but it had not been effective.
- She said she believes that my functional medicine and restrictive diet is a bunch of "hooey".

[MyGirlsMom]

Good discussion!
I have never specifically asked about prognosis. Last year when I was going through flares and other health problems my neuro told me my MS was mild. When I had to stop working because disability ran out and I couldn’t continue full time, I called to let him know. He said he was surprised as he saw this coming. I was shocked because I interpreted the “mild” comment that I should be able to push through better than I had been doing.

I have had so many various issues along with significant fatigue that there is no way I could work right now (although mentally I miss it more than I can describe and am fearful that I will not ever get back to that again).

With MS, none of us knows what the future will bring. All of us struggle with different symptoms and issues so even comparing with each other is impossible.

Hang in there everyone!!

[jjs]

- She said she believes that my functional medicine and restrictive diet is a bunch of "hooey".

LOL! That's pretty much what I got from my new neuro ... but, it does seem like she thinks a "sensible diet" is the way to go. Easy on the sugar and refined stuff, eat more veg, etc., so that's something anyway, right?!

[Jules A]

My MS specialist was vague when I asked how long I can expect to remain mobile which is preferable to someone aserting they have an actual answer I suppose. Like others have noted there is no way to predict 100% but I feel fairly certain I have read enough to have a decent idea of my overall long term prognosis.

[pennstater]

Neither neuro that I have seen offered any prognosis. Both said there is no reason I shouldn't be optimistic, but agreed that strategy to plan for the worst, just in case.


When I tried to push after reading studies that weren't favorable for me (late diagnosis and late start to DMT usage, 3 times number of spinal lessions than brain, unresolved symptoms from relapses including first one affecting cognition), both said something similar - stats are just that, there are always outliers.

When my first neuro retired, on my last visit, he pointed out that I had lived life with MS as a companion for 43% of my life and possibly even 66% of it. And when you thought about that, I was already beating the stats, and no reason I couldn't keep beating them. Loved my first neuro.

So rather than focus on prognosis, I always tell myself that there are always people who beat the odds, so why not me!

[gargantua]

We switched from a private practice to a busy research clinic where the right hand doesn't know what the left hand is doing administratively. I'm certain my name does not call up anything specific except maybe "MS patient" for my doctor. Trust him? The moment we started Tysabri I gave it over to science, so for now why not. If he doesn't know something he says "I don't know" and if he does, he answers like we're medical students. We manage.

So rather than focus on prognosis, I always tell myself that there are always people who beat the odds, so why not me!

Amen. Mine reviewed some pretty massive lesions on my MRI, said based on history I've probably had MS 20 years and then said "you're gonna do fine." My general health right now is good and I'm quite well abled, so I'll stick with what he said. There's no reason not to.

[Thinkimjob]

Every neurologist I’ve ever seen has said basically a version of, “How do you think you are going?”, which would have been in the “how to talk about difficult subjects” class at neuro school.
That lets me say what I think, and lets them see whether I’m coping mentally. (I’ve never been contradicted in more than twenty years - from “I think I’m going pretty well” to um, “I think the need for a wheelie walker and a scooter might be telling me something”.)
I know how I’m progressing, and it’s only going one way.

They all seem keen to keep RRMS people on the DMD/Ts, even when it’s obvious things have turned the SPMS corner.

I believe they are doing so ro a) give you hope; b) they don’t know what these news drugs might be able to do and c) because they haven’t got anything better to offer.

[Jules A]

I believe they are doing so ro a) give you hope; b) they don’t know what these news drugs might be able to do and c) because they haven’t got anything better to offer.

I agree with all the above.