[Desinie]

So I went and had an MRI of my brain with and without contrast on May 21st. This was the first MRI I had in about 8 years ( Just a bit of my background info: I've been on Copaxone that whole time. I was diagnosed in 1999, but had my first exacerbation back in 1992 which was misdiagnosed as Lyme Disease followed by a fairly long remission when I became pregnant). My neuro told me to call him a week after the MRI to get the results. So, I did and after 2 full days, he returned my call.


Even though I did get a CD of my MRI, of course, I couldn't really make much of it. Other than that I could see some lesions.

Anyhow, this is what my neuro said as to the results. The lesions I have are periventricular. When I asked him for a number amount of the lesions, he said, " Oh, I'd say it's a medium amount." ( Whatever that means ) I asked him if there were any lesions on my brain stem. I thought there probably were and that was to blame for my ataxia and lack of balance. He told me there are no lesions on my brain stem or cerebellum. I was glad to hear that.

He said none of my lesions were enhancing, so therefore there's no inflammation. More good news, I guess there. He also told me he doesn't recommend any DMD change at this time. Because my last MRI of my brain was in 2000 it was not readily available to compare to this new one. He said sometimes some are kept in archives/medical records, but he didn't know if mine was. I asked him to mail me the radiologist report for my records, which he ( most likely his staff) is going to do.

I feel real rushed anytime I get to speak to my neuro. I think some of you can relate to that too. If this were the kinda response you got to your MRI results, what would you think? I know waiting on the radiology report should give me more complete answers.


Thanks in advance for your thoughts. I read this board just about everyday and feel like I know you all, even though I'm not as talkative as some. I feel a special bond to all of you!

[Jules A]

Hi,
I'm not familiar with your history or whether you sought the MRI because you are having increasing problems or not but unless your lesion load has really increased I would probably take the lack of inflammation as a good thing.

Unfortunately there are so many gray areas with MRIs and MS in general I almost rather hear things like "medium" (they call mine multiple) amount of lesions than someone acting like they can predict with absolute certainty how many lesions are there at any given time.

Definitely read the report but I wouldn't be disappointed if it really doesn't say much more. Jules

[NurseNancy]

hi desinie,

i'm no dr but this sounds very stable to me.
especially if your clinical picture is stable.

if you are comfortable with your dr and trust him i'd feel comfortable with the phone conversation.

[Randolf Scott]

I was at a neuro doctor who was sitting across the room from me looking this way, looking that way at my brain x-ray. Then he exclaims ---oh, I got it upside down. He recommends immediate surgery and rushes me down the street. Go into that dudes examing room, and every wall (I'm not kidd'n) has films hanging on it. Like wall paper. He just laughs and says he wouldn't get all excited about it. He would'nt do surgery. This was the newer doctor in the practice. I think the senior doc and my original dude had a racket going on. Because without a surgery, there was no reason for all the test he did !

Then - its been in to see this doctor and that doctor. I have a whole cabinet of RX.

This is been going on for ..ah..seven years. Then yesterday, I flip on PBS TV and Alice Flaherty is talking about Geschwind syndrome. God - half the cure is in understanding it. Looking back I think this one doctor was on the path but I couldn't stand him. You've ever been to one who is so rude, you just can't go back?

Originally Posted by Desinie

So I went and had an MRI of my brain with and without contrast on May 21st. This was the first MRI I had in about 8 years ( Just a bit of my background info: I've been on Copaxone that whole time. I was diagnosed in 1999, but had my first exacerbation back in 1992 which was misdiagnosed as Lyme Disease followed by a fairly long remission when I became pregnant). My neuro told me to call him a week after the MRI to get the results. So, I did and after 2 full days, he returned my call.


Even though I did get a CD of my MRI, of course, I couldn't really make much of it. Other than that I could see some lesions.

Anyhow, this is what my neuro said as to the results. The lesions I have are periventricular. When I asked him for a number amount of the lesions, he said, " Oh, I'd say it's a medium amount." ( Whatever that means ) I asked him if there were any lesions on my brain stem. I thought there probably were and that was to blame for my ataxia and lack of balance. He told me there are no lesions on my brain stem or cerebellum. I was glad to hear that.

He said none of my lesions were enhancing, so therefore there's no inflammation. More good news, I guess there. He also told me he doesn't recommend any DMD change at this time. Because my last MRI of my brain was in 2000 it was not readily available to compare to this new one. He said sometimes some are kept in archives/medical records, but he didn't know if mine was. I asked him to mail me the radiologist report for my records, which he ( most likely his staff) is going to do.

I feel real rushed anytime I get to speak to my neuro. I think some of you can relate to that too. If this were the kinda response you got to your MRI results, what would you think? I know waiting on the radiology report should give me more complete answers.


Thanks in advance for your thoughts. I read this board just about everyday and feel like I know you all, even though I'm not as talkative as some. I feel a special bond to all of you!

[Desinie]

Hi Randall,
Welcome to NeuroTalk. I can understand what you're saying about doctors not taking their time and being as thorough as they should be. And yes, I've come across my fair share of rude doctors too.

Perhaps since you're new here you could start a new thread to introduce yourself. I take it you aren't currently diagnosed with MS?

[Dejibo]

What my MS center likes to do is compare the new MRI to the old MRI, and then based on the pattern of old lesion load, vs the pattern of new lesion load they make a determination on what to do, and how best to handle it.

Clear as mud?

I am surprised they went 8 years with no MRI study on you.

I hope they are able to pull your old records from the archieves and give you some clarity.

NEVER let the MD rush you. Firmly plant your behind in that chair, have your list of questions at the ready, and when he says something that confuses or upsets you, say...Can you please explain what that means? I dont care if it takes all day. You deserve answers and clarity.

Good luck.

[Desinie]

Originally Posted by Dejibo

What my MS center likes to do is compare the new MRI to the old MRI, and then based on the pattern of old lesion load, vs the pattern of new lesion load they make a determination on what to do, and how best to handle it.

Clear as mud?

I am surprised they went 8 years with no MRI study on you.

I hope they are able to pull your old records from the archieves and give you some clarity.

NEVER let the MD rush you. Firmly plant your behind in that chair, have your list of questions at the ready, and when he says something that confuses or upsets you, say...Can you please explain what that means? I dont care if it takes all day. You deserve answers and clarity.

Good luck.

I usually always take a list when I go to the neuro, but feel so rushed by him that I don't get to all of my questions. Usually I get very vague answers from him such as, " I'd say you're doing ok or stable." I'm fairly certain that my neuro is just about ready for retirement. His nurse that I spoke to on the phone like last year told me so. When I was checking out to leave from my appt. with him on April 30th, the secretary said they didn't have his schedule yet to make an appt. for 6 months from then.

I think when I reschedule for my next appt. I'll make it with the other MS specialist who is in that practice. Thanks for the push I needed to be more vocal with my neuro to get answers and better care. I did know all along what I needed to do, but I guess felt intimidated by him so wasn't as vocal about getting what I needed from him as I should have been.

[Dejibo]

I would make sure that the next appointment went VERY differently if I were you. Go in with your boxing gloves on. The moment he walks in the door, tell him. I FEEL DISMISSED. I NEED you to SIT down and TALK to me. I understand that you have a office full of people that are clamoring for your attention, BUT for this moment, YOU BELONG TO ME. So, please, sit down, and lets start over. Most MDs get into a rush rush rush frame of mind, and will rarely slow down unless someone calls them on their bad behavior.

If you still feel dismissed after speaking up for yourself. I would seek out a new MS neuro. Go to an MS center.

This disease is too awful, and we can become too fragile too quickly to be dismissed.

Wanna borrow my boxing gloves?