OT Odd Neuro Appointment

[Corriel]

Hi all! I had my annual neuro appt this morning and it was my first since my dx so I went armed with my goodies and ready to chat.

I don't know what the standard is for these and while I am glad to have gotten to ask him about new sx, get Baclofen and start the process for Tecfidera apprivals, there was no neuro exam. I admit to being perplexed by this. He noted my new symptoms and I will finally get an MRI of c-spine and he ordered a brain one too since it had been almost 2 years since my first one but he is not expecting any "surprises" with the scans. Unless I have a major relapse I won't see him for another year, not even after the MRI.

I can get the scan results from my PCP later for my own interest but I found the overall appointment to be on the good side uneventful but on the bad side I had expected a neuro exam, even a partial one.

Next year I will ask about one but I was too surprised to think of it this morning.

Overall, a good visit because he considers me stable with only one major relapse and two smaller ones for my first year despite several new sx so I am trying not to feel that I got the short end somehow.

Corrie

[candy158]

Heh Corrie , glad to hear that you are stable at the moment, whatever that really means , but it is good that there is not a whole lot new stuff.

The teciferera wasn't an option for me, so they chose Augagio and I probably will start that new journey next week.

I do hope that you will do well on this new drug.

take care, and keep in touch,
((HUGS))
Candy

[Corriel]

Thanks Kyle! I guess no matter how much you prepare, there's always a twist to these appointments I never see coming. :-)

I am getting excited about Tec. I know my insurance at work won't cover it unless I have 2 failed courses of treatment with the injectables so I am hoping the drug company helps out.

They are sending me the meds in a few days to bridge me while we sort out insurance paperwork and the company knows my insurance is not likely to approve it so if they are still sending me the meds I am hopeful I can make the switch without it costing me too much.

The ironic thing is Tec is apparently the same price as my Rebif so I do not get the hesitancy to approve.

Corrie

[kwarendorf]

The consolation prize seems to be that with your limited neuro access,  the current one is "OK". I would not be crazy about no neuro exam. Nor would I be thrilled with having to discuss your MRI results with your PCP.

On the up side you have a DX and you're on the path to Tecfidera.

Kyle

[Corriel]

Thanks so much ladies!

Laura (Lulu) 10 years from now is a question I hadn't thought about it but definitely should be one to ask myself.

I think my physiatrist will continue to do exams and she indicated that if I need to see her beyond our annual appt to just call and set something up so I guess I am covered, albeit by 2 different specialists.

Alex, I hope he was just distracted and maybe because I keep informed he trusts that what I say I notice for sx is enough. He has never done a very full neuro exam just a partial one on first visit, so I get the impression that he is not concerned unless there is something major going on.

Upon entering his office he motioned for me to sit at his desk and not the exam table. He is very busy and has a 2 year waiting list so I am guessing his appts are as short as possible to allow time to see everyone.

Laura (Maracamama), thank you for the well wishes and I know you understand that the other neuro is not a potential replacement. Fingers crossed that this is just an off day for my neuro.

Take care ladies,

Corrie

[Maracamama]

I certainly hope your neuro doesn't start taking lessons from the other neuro in his office :)  Although, she did do a neuro exam every time I was in her office.

Maybe he was just distracted or didn't think there was any value in it since it wasn't going to change your treatment.

You've always seemed to like and trust him.  Hopefully that continues.

Good luck with your new job.

Laura

[HVAC]

The Neurologists may have been super busy and distracted. Mine does the Neuro exam first thing before he even talks to me. Then I can bring up one issue which most concerns me. Anymore issues and I need another appointment. You can always get another appointment.


Alex

[Lulu54]

In my opinion, I think your concerns are very legitimate and although they might not be a problem so much in the short term, in the next decade do you see yourself still in his care?   I wish you had more options.  Perhaps the physiatrist can see you twice a year and push for more aggressive medical care?

take care, Laura

[Corriel]

Thanks Laura, he did not notice anything to indicate spinal cord lesions in my only neuro exam with him over a year ago and my new symptoms all seem to be spinal cord related and they started about 8 months ago with my last minor relapse so I am concerened from that aspect since there was nothing to indicate MS before all of this started 18 months ago. Having a dx after 40 and with it not looking like I have had MS before that, new spinal cord issues are scary.

As you mentiined, I am limited with options due to my geo location. There are only 2 neuros in my city and they share an office. I know of several who see the other neuro and are not happy so an easy switch won't be possible.

I am lucky to also be followed by a physiatrist who does a neuro exam each visit and I see her once a year. She is very thorough and compassionate. It was actually due to her neuro exam last summer that the spasticity and other symptoms got identified.

My neuro is not aggressive with treatment my PCP told me once and the neuro himself mentioned yesterdaythat only if I have 2-3 major relapses in a year will he consider that first line drugs are not working. That gives me even more pause.

A lot to think about but I will shift my focus to trying to get Tec approved and then get the MRI over with.

Thank you so much for your comments, I wasn't sure if my concern was missplaced or not.

Corrie

[Lulu54]

Corrie,
I would be ok with not doing a new neuro exam EXCEPT you have had these relapses in the past year and you have new symptoms.  And you are newly diagnosed and need to spend a few more minutes with him reviewing your questions and it sound like you didn't get that.

I'm not comfortable with him being ok with you having only had one major relapse and a few minor ones in a year.  The goal is to have ZERO and he should be spending more time evaluating where you are right now.  

Being in Canada, you don't have many options, if I understand correctly.  I hope your primary care doctor can spend time with you to review your MRI results and spend some time answering your questions.

hugs, Laura