[Kitty]

I saw my neurologist this week for a follow up appointment after the IVSM I had in June.

Several things concerned me. First, I have been using my walker now for several years and he saw it in the room and commented that it was new and why I felt I needed it. I told him I've had it for several years and have been bringing it with me to appointments for quite a while.

Second, he has been pushing for me to get on Tysabri for a couple of years now but I've refused. Now that Tecfidera is no longer an option for me I've been researching Ty and told him that I'm thinking about trying it now. He said that Ty was a strong drug and might not be a good fit for me. What?? He's been trying to get me to take it for a couple of years......now, he acts like it's a brand new idea.

I told him he'd been trying to get me to take it for quite a while (is this stuff not in my medical records??) and that I'd been reading up on it. He finally said "well, we can try it" but didn't sound too convincing.

In his defense he has been diagnosed with cancer a few years ago and was out for a while doing chemo and radiation. He's been back full-time now for over a year and seems to be doing well.

He wanted me to have an MRI of my neck (I just had one of my brain.....why wasn't this done then??) so I am scheduled for one in August.

He just seemed disconnected. Sort of foggy. Maybe it had just been "one of those days" for him or he was tired. I know they have a lot to remember and I don't expect him to remember every detail about me.......but my walker is a constant with me and I've had it with me for several years in appointments with him. And the Ty thing......what's up with that?? He's asked me to consider it every time I've had an appointment and now he's acting like it's a new thought!

Maybe I'm overthinking this but I'm just concerned for him.....and for me, too!!

Edit to add: He's probably the same age as me (mid 50's) but could possibly be younger.

[mrsD]

I bet it is Chemo brain. That happens to some people. You'll have to be very vigilant with him. If he does not get mad when you correct him, I'd stick with him a bit. But research everything on your own if you aren't yet.

He may be still "good" on theory, but fuzzy on details.

[Jomar]

That would be concerning..
I'd see if same thing happens again at next visit..
But be careful of any new things he brings up as it might be problematic for you..

It might be a one day fogginess, but if happens more often, maybe he is working when he shouldn't be..and no one in the office or family, will suggest there is a problem and he should not be working at this time..
He might be trying to keep working to get the income... but peoples lives are at stake in that profession..

[Debbie D]

Good advice...be a proactive health care consumer, Kel...

[NurseNancy]

i agree with all the above advice. do you know what kind of Ca he had?
when you have another appt you might approach things from a more concern for him. he might open up to you so you could have an open conversation.

in the meantime (you're probably already doing this) get copies of the CD's and report for yourself. then you'll know what the results are before you go.

so, if you're honest with him about your concerns he might be honest in answering your Q's. but, come at him from a concerned point of view. i hope all this had made sense because it does in my head.

[mrsD]

My doctor told me all about her 2 cancers... after I asked.
She took a year off the heal. Thyroid and breast cancer.

She is 71 now. Practices 1/2 time only.

[Kitty]

The office staff was very hush-hush about it when he was out but I think it was Leukemia.

He's not very talkative and really not someone who'd open up.......especially to a patient. If it were another woman/doctor I think I could probably start a conversation with her about it. But it's just different with a man. It seems very personal and not appropriate to bring it up. Maybe I'm wrong but my relationship with him just isn't that "open". I mean, he's a great Neuro but that's as far as I've opened up with him.

I research everything he suggests to me anyway so I'm not going to begin a new med or anything without plenty of study.

He brought up Gilenya as a possible medication for me. He has never mentioned that one before but the Tysabri was an ongoing conversation with him. I thought he'd be glad to hear that I'm finally open to trying it. Oh well....

[Jules A]

This is concerning and like the others have suggested I would also watch and see. Its possible for whatever reason he was having an off day. Perhaps this is the time to get a second opinion to review everything? I don't think that is ever a bad idea especially if you have been treated by the same doc for a while. It doesn't mean you leave your main doc just that you are getting a second set of eyes, a fresh set, on your case.

In all fairness I try to take the time to glance over my patients chart before I see them to refresh my memory but there are times when that isn't possible and I have said some off the wall things also.

Its hard to remember everyone's particulars and sometimes I will have two patients of similar demographics, similar presentations and I have difficulty keeping straight the particulars if I don't read the chart first. I'm fairly sharp still, knock wood, so I largely put this off as trying to multi-task at the speed of light while seeing 16+ patients a day. Good luck!

[Kitty]

Thanks, Jules. I keep telling myself that I'm not his only patient and if I had to try and remember each detail about everyone I would probably make some off-the-wall comments, too.

I go for an MRI this Saturday and have to get some blood work so when I go back I'll certainly be on the lookout for any strange behavior. Honestly, I think I might be hyper-sensitive to things like this just because I sometimes feel like others are watching me just a bit too closely. Especially my family.

[Lynn]

I certainly agree with everyone else, be vigilant - it could be 'chemo-brain'. Having said that, I think that with all the bad press about Tysabri in the past few years, I would think many doctors are somewhat reluctant. Do you know you JCV status? That makes a huge difference, and even if you were JCV+ your chances of PML are almost negligible for the first two years, and if you are negative, you are safe, as long s you have frequent tests. It truly is a wonderful drug.

It might be time to find another doc, who is more up to date, although I understand your loyalty.

Hugs

Lyn