New protocol????

[beema36]

I just got back from my neurology checkup.  I am very confused. I was diagnosed with ms years ago. Today he tells me there's new guidelines. First one is all ms patients are to have yearly EEGs to check for cognitive decline or changes. He contends that this is better than neuro/psych exams. Secondly its recommended that everyone with ms wear a pedometer as we are to take 10000 steps daily for our health. Okay I agree walking and exercise is good but for example in my case I have weakness,  balance issues plus due to autonomic dysfunction will pass out if on my feet for more than a few minutes. At my cardiologists recommendation I ride a recumbant bike daily and do fairly well with that as long as I watch myself after for signs of syncope. Dr tells me I need to get a pedometer that syncs with my phone and bring this information to him every checkup. Excuse me? Those are expensive?  And why a yearly EEG? I had one a year ago and it was okay.
Have I missed something?

[Ojibajo]

Required? Like a law? I was diagnosed and I've NEVER had one. I don't even know what that is. In fact I'm going to Google it.

[supermum_ms]

lol so if most can't walk and most don't end up in a wheelchair, they surely must be doing their 10,000 steps on roller skates, see the logic - errrr maybe not!

oooh i love a good laugh :D

[beema36]

I definitely am moving on. I told my primary until I find a new neuro hes in charge of the ms. He was horrified when I told him the latest on this neuro. He said he would laugh but its too appalling.  

[Lulu54]

I think we need to add this to our LIES OUR NEUROS TOLD US page - these are some doozies!  

It's really time for you to move on to another neurologist - there has to be someone more in tune to the real MS than this guy.  

Yikes!!!

[LilMinnie]

Haha, I have a feeling there would be several worthy nominees for that (un) distinguished honor...my first neurologist being one! But yes, even though I'm not diagnosed, that guy seems like he's got an agenda and his logic makes no sense.

All the best, Hugs, Minnie

[SarahL2491]

I nominate him for Idiot Neuro of the Year

[beema36]

You all just confirmed everything I thought. I don't know where hes coming from. Have been with him 13 years and never been comfortable with him.

He also made the remark yesterday that most people with ms can't walk at this stage. This from the man that told me once that the majority of.patients don't end up in wherlchair??? And if most can't walk why would they tell us to do 10000 steps?  I asked him this and he told me I overthink things.

I am finding a new neuro for sure.

[sllowe]

I've not heard of it either. But, I'd be willing to research it when I have time.

It's strange in the sense of official guidelines (because we are unaware of it) - but it's not-so strange to me "if" in practice MS doctors ordered EEGs to monitor cognitive impairment at the same time they monitor us physically during exam, and by way of imaging. To me, would have it's place in certain cases especially in clinical care.  i.e., the EEGs show impairment and imaging shows increase in lesion load. This could (to me) potentially be a tool used for consider therapy changes, etc.

I'd not turn it down for sure if it were offered to me yearly.

-shell

[kwarendorf]

It seems he forgot to mention that these were HIS new guidelines :-) I've never had an MS related EEG.

Kyle

[HVAC]

Never heard of such a thing. I would have to buy a phone and a pedimeter.

Alex

[supermum_ms]

I do not understand!! Where on earth is your neuro pulling his 'new guidelines' for people with MS from?

The EEG for monitoring any cognitive changes, is possibly connected to all the recent cognitive research but as a 12 monthly 'rule' it's rather questionable at best, because there is NO benefit to the patient, they have nothing (yet) to offer the patient who does have cognitive issues, so in my head I can't find what benefits, if any the patient would get for their expenditure.

Saying an EEG is better than neuro/psych exams is a false statement, they provide different information so neither one is really better than the other but from my perspective neuro-psych exams provide a lot more helpful or patient specific information than an EEG can. Neuro-psych testing will pick up, which areas of the brain are dysfunctional and a patient specific therapy can be developed to help them, the EEG doesn't go into helping the patient, its more for dx-ing the problem and how the brain functions.

The 10,000 steps daily for health can't possibly be a 'rule' or 'guideline for people with MS. For people with MS or any chronic medical condition, the 10,000 steps a day, would be beyond the capabilities of a large proportion of people who are ambulatory, and excludes or ignores the reality of MS for it to be a MS guideline, so it just doesn't make any sense for it to be correct!

These guidelines do not take into account the individual and you have co-morbid medical issues that must be taken into account! err this might be a dumb question but aren't guidelines suppose to be just a preferable idealisation, not a rule that must be followed? In MS the rules do not apply so what can he say if you decide to not participate with his new guidelines?

Confused........JJ  

    

[grandmalaurie59]

I see my MS Specialist next Tues. I will let you know if he mentions any of this. I haven't seen him since early November.

Laurie :)

[SarahL2491]

Egads.......recommendations heck, NOT rules........girl you need a new neuro.  This one is an idiot.  EEG?  is he nuts?  If my neuro set those rules down, he wouldn't be my neuro long  

Ask him to provide you with a copy of it and WHY he thinks this is so important!  I wonder if he's getting a kickback or something or has enrolled his patients in a study and isn't telling them.  Everyone else is right, EEG is when you are trying to get a Dx.

bring HIM the ped results?  What the heck?  New neuro........

[beema36]

Thank you! You all are saying just what I thought! I can't walk well at all plus I would faint! I also can't afford an expensive pedometer.  The EEG is a money making scheme to me. I am so upset.

[TLC_31]

At my neurologist visit three weeks ago, he said nothing about an EEG. He simply tested my cognitive function by having me remember three words. About 30 minutes later I only recalled two, but I got the third one on a multiple choice. :-(

10,000 steps is five miles, and "everyone" with MS isn't going to be able to do that every day. It's a nice target for those who prefer walking/running to other exercise, but I'm not sure "everyone" period can pull that off. I run (and my neurologist would never suggest carrying a pedometer), but I would rarely get 35 miles in a week.

[doublevision1]

I agree with Sierra, very strange indeed.  I cant imagine it is common practice in neurology for patients to have to *prove* to their doctor that they are exercising some minimum amount.  Many patients can't walk much or at all - especially true with MS - so if they're getting their exercise some other way, like swimming, or exercise bike like you - what's a pedometer going to tell them?  How does one prove that they get their exercise these alternate ways?

I've heard of the 10,000 steps a day recommendation, for the general population.  I've never heard of any kind of doc requiring a patient to obtain technology to prove they're following thus guideline.  What if the patient doesn't have the means to purchase a pedometer and/or phone?

This sounds kind of shady to me, like he wants to monitor you specifically and instead of being up front, has concocted some justification for doing so.

Ive never heard about the EEG guideline.

I would ask him to point you to the literature that supports what he is asking of you.  You could frame it as just wanting to better understand the background of these guidelines.

[Sierra28]

That just sounds strange!

I would think an EEG would only be needed if you started having new symptoms that could be checked out that way.

And the pedometer? Why would a neurologist need to know your regular exercise info? I could see if it was your cardiologist or something, but I can't even imagine them wanting to hash through 6 months/a year's worth of data on the amount you've walked and your heart rate and pulse while doing so!

Very strange "guidelines" indeed!

[beema36]

The AMA. It doesn't make any sense to me at all.

[doublevision1]

Who did he say has issued these guidelines?