Neuros and MRIs

[agate]

It's a good thing I never expected much assistance from neuros because all of them seem to have the idea in their heads that it's their job as a doctor to prescribe, and if they can't prescribe something you'll take, then they're of no use to you.

Yesterday my current neuro told me that. He handed out a sample of Provigil after agreeing with me that Ritalin would be a bit iffy especially since I'd have to make a trip to his office every month just to get the Ritalin (!), he pitched Amantadine, and when he realized he wouldn't be writing rx's for any of these because I'm reluctant to rock the boat by taking anything new, he said I could come back in 3 years if I wanted.

I mentioned that my PCP had said she'd be more comfortable if I'd check in with him more often because she doesn't feel she knows enough about MS.

So we arranged that I'll see the neuro every year to see how my memory is doing.

I agreed to that because memory is a concern of mine.

Yesterday's visit was for the purpose of discussing the results of the recent MRI (about 10 days ago), my 5th brain MRI.

I had seen the radiologist's report for the MRI and didn't understand why there was no comparison with at least one previous MRI (2011).

I asked the neuro about comparing them so we could see if the brain atrophy had got worse in the last 4 years.

He said that the radiologist was just a general radiologist and hadn't had access to the prior MRIs. (Why not? The two more recent ones were done at the same place and he could easily have obtained them.)

The neuro tried to get them on the computer screen but said the software wouldn't allow this kind of comparison to show up.

Seems to me that with MS, the picture OVER TIME often matters. If they're going to do these MRIs as often as they seem to like doing them, why aren't MRIs compared with earlier MRIs routinely?

If you have a neuro who orders MRIs, is there usually some comparing done?

[Gary]

I totally agree!!

My last MRI said..........the increase of white matter lesions over previous MRI are too many to accurately count....... Impression: MRI is consistent with patients diagnosis of Multiple Sclerosis............ $250 to interpret and $4,000 to take it.

I can see no reason to go back to the neuro. I don't tolerate the MS meds and most importantly I cant afford them. Seems like every time I see a specialist they say "well I really cant do more than your PCP is doing" And they get upset when I say any new meds have to go through my PCP anyway.

[Virginia]

Agate, that was a wasted trip it sounds like. Of course the MRIs should be compared. Your concerns are valid and should have been addressed. He was probably ticked off because you would not take his meds.

I have stated over and over that I like my Neuro very much, however even he was somewhat huffy on my last trip. They reach a point where they can't do anything for you and they just kind of don't want you to be there because it reminds them that they are not all powerful. At least this is my thinking, and I know it is not true of all of them, but I do think many are like that.

How foolish to give a person a medication that has MS and then have them return every month for another prescription. Especially one who does not drive as you do not.

Things like this just make me very angry!!!

[agate]

Thanks so much for the thoughtful reply. I think you're right. If they can't write an rx for you, they figure they're useless to you.

Actually they could be tracking the progress of a person's MS through regular neurological exams and MRIs and other tests and recommending ways for that person to cope with increasing disability.

Someone with MS comes in with a newly developed limp, and a neuro could refer that person for an AFO or rehab or whatever seems appropriate.

I was hoping to discuss with the neuro what kind of walker would really be best for me (stationary or 2 wheels or 4, for instance) but I'll bet that if I'd raised the issue I'd have been told that was not anything he knew anything about.

And why do neuros so seldom take a good look at how a person walks? There usually isn't enough room but they could have offices with a long corridor for patients to walk down.

There was such a corridor when I was in the VA Hospital study. Study participants had to do a timed 25-foot walk up and down it several times over the year and a half of the study.

Walking is so important that I can't imagine why neuros aren't concentrating on it. Instead we get reflex hammers and tuning forks and a brief eye-movement exam.

For instance when I was in the waiting room checking out, a man in a wheelchair came in, positioned himself near the reception desk, then fell out of his wheelchair. He got up and dusted himself off and muttered, "I do this every few days" and seemed OK.

I don't know if he had MS or another disorder but this is the way many of us live: falling down often and being so used to it that we try to laugh it off, but who wants to be in danger of falling?

People with MS (and Parkinson's and several other neurological disorders for that matter) are in it for the long haul. We have to live day in and day out with our limitations, which are often severe.

Neuros don't seem to want to address this glaring fact unless they can write a prescription.

It's an easy way of getting the patient out of there so they can get on with the next patient. Toss an rx at the patient and move on.

[Howie]

MS since '98, and I've never had a Neuro. Sounds like I've sure missed a whole lot of pleasant experiences with caring, egoless doctors.

[nuthatch]

I'm to the point that I only go see the neuro once a year because I need a form filled out by him every year in order to keep receiving my sorry little disability check. He also writes me a new Rx for my LDN.
Funny that when I first wanted to try LDN he would not prescribe it because it wasn't a "proven" treatment for MS. I then approached my GP, who agreed that it couldn't hurt, so she prescribed. After a couple of years on it, the neuro saw that I was doing well on it and started prescribing it to other patients of his with MS who were interested in it. I guess I was a test case, so to speak . . . so now he writes my Rx for the LDN. At least he's good for something!

All he does when I see him is smack me in a few places with his little hammer, does a very quick test of arm and hand strength, and a follow the finger/eye tracking test. Every year I feel like we just go through the motions in order to justify the cost. That'll be about $200 . . . thank you very much! He hasn't suggested an MRI in years, which is fine with me. It may be one big black hole in there! Hmmmmmmm . . . Steven Hawking?

[Virginia]

Agate, if you have not seen it, would you take a look at the question I asked in the post on helping with cost of drugs by JTwin? Thanks! Figured you would come back here since it is your post and not sure you would see the other one again.

[Lazarus]

I see my neuro every three months. He does a lot to check my progress and together we plan the next step.

My neuro spends an hour with me each time. He makes sure I look at my list so that I have brought up everything on it.

I know I am lucky but I wanted to suggest that if you are having trouble connecting with your neuro that you take time to write a short note explaining the problem as you see it. Pick the biggest concern you have and ask for a response.
I am not suggesting a laundry list.

I bet you will be surprised by the response you get. Patients and doctors can easily misread each other's motives/thoughts/intentions.

Linda

[Virginia]

Linda, stay with him. You are fortunate.

[stillstANNding]

Agate, are you seeing a Neuro or a Neuro who is a MS Specialist. I agree w you that comparison is what you need to know.

ANN

[agate]

ANN, when I moved I needed to replace all of my medical providers and relied on the primary care doctor for referrals to a neurologist, ophthalmologist, and podiatrist. The neuro isn't an MS specialist but the local MS specialists were all either (a) not accepting new patients or (b) not accepting patients on Medicare/Medicaid.

I tried for an MS specialist first, before asking the primary care doctor. I asked the MS Society for names of MS specialists and called them.

This guy is fine for my purposes, really. I think the problem arose mainly on account of an inefficient office staff. They let a garbled instruction go out to the MRI people. I had asked them to fix it but it looks as if they didn't.

Of course the doctor and his partners are the ones who hire the office staff but someone can be a knowledgeable doctor but not be adept at employing office people.

This was the MRI instruction that apparently went out:

1) MRI brain without and with contrast evaluate for him to full changes and rule out prior stroke.

It makes very little sense but when I called about it, shortly after I got home and looked at the papers I'd been given after my earlier visit, I was told that it was just the way their system typed from dictation and not to worry about it--the MRI people would know what it meant.

[Cherie]

Like Lazarus and others, my neuro sees me every 4-6 months at the outside. He is dogged about being there to support even though my disease process is not documented by the every three year MRI's. He looks at the neuro checks and reports by me and catalogues the progress regularly. I feel like he is a true advocate and support when I don't necessarily have a lot of other support out there. If you have a doc you can talk to and trust, it is Golden! Hang on to them!

[Cat Dancer]

I went for a long time not seeing a neurologist. I was declining, slowly, but on Betaseron. Didn't think I needed a neuro to tell me I was declining. But then my PCP at the time (long gone, now) told me I should consider getting off Beta, as "at your age (62) your MS has probably "burned out". You've been at this same level for awhile, now, probably won't get much worse." so after thinking about it for awhile, I decided to follow his advice.

Worst decision I ever made. The decline accelerated, and now I've had nearly 3 years of fragile to frail health, hospital visits, nursing home, rehab centers; bedsores that won't heal (well, it's healing but taking FOREVER), During the first hospitalization, a neuro was consulted, and he agreed to "follow" my case. I had an MRI several years ago when I had a mini-stroke. He looked at that, said essential, "yes, you do have MS, here are lesions...." and didn't feel there was any need for any more. He did put me on Techfidera. I haven't noticed any major change, but since Tech is just swallowing 2 pills a day, and my insurance company is paying for it, I'm staying on it.

So I see the neuro every 6 months. He mainly is monitoring the Tech, as it can (like all of them) cause liver damage. He does keep track of me through working with my current PCP, and with the home nurses that have been coming for 2 years now. They all exchange information with each other, and so don't "over prescribe", or overdo any testing. For example, the doctor treating the pressure sore had been running blood tests monthly to see if my nutritional levels were improving. He shared those with my PCP, who forwarded them to the neuro. So when I go to any of them, they'll tell me what they've learned from the others. So basically, I feel pretty well medically cared for.

The visits with the neuro take around 15 minutes He tests arm and leg strength, asks me if I've noticed anything or have questions, answers those, shares the results of any blood tests I might have taken (with the other doctor), then sends me on my way.

[Cherie]

Cat...same here. When I came off more than 2 years of high dose Cytoxan in the summer of 2011, my neuro told me that statistically, I had a very good chance of not having any further MS disease activity or relapse because I was 60 and my immune system had most likely been rebooted. less than 8 months later I had one of the worst relapses in the course of the illness and after three years have not gotten back to that baseline even though I went back on disease modify medication.