Neuro appointment

[LATW]

Saw my doc today.  He is an odd one.  He comes in asks how I am doing.  I give him my complaints.  Today it was the weird spasms in my hands that have caused me to drop things out of my right hand and my numb left heel.

He does a really quick neuro exam and then goes over my meds with me to make sure I get the refills I need.

He is trying to get me started on the medication that is supposed to help with walking.  Can not remember the name.  He said they have had a difficult time getting it lately.

And that was it.  I know nothing can be done about MS.  He told me last time where he feels I am in progression.  I am on a lot of meds.  

I know he is a good doctor.  He was the only one smart enough to do an LP!  But it is a little frustrating to not get much feed back.  He does ask if I have any questions but he does not wait long enough for me to really think.

:(

LA

[Lulu54]

Hi LA, A good tactic is to write your questions in advance and take them with you.  Keep a pen handy during the appt and jot notes about anything else you want to ask.  

Did he write a rx for Ampyra or 4AP?  The 4AP can be made in a compouding pharmacy.  

In one of my lunches last week the woman I was with  talked about ampyra vs 4AP.  She was on 4ap for several years and switched to Ampyra.  

She said the Ampyra did not work as well for her because it is a gradual dose.  She said the boost she got from the 4AP was enough to help her complete activites.  She said she didn't have that boost with Ampyra, and has now gone back to Ampyra.

When do you see this neuro again?  

-Lu

[LATW]

I see him again in 3 months. The rx is for Ampyra. Writing down my questions is a great idea with this doctor.

Why did she go back to Ampyra when the 4AP is working better?  What is 4AP?

LA

[opie74]

4Ap was the test version.  It is much more affordable than the name brand.  But, if the scrip is for Ampyra, then they can not substitute.  I would ask to get ti Rx changed.

[LATW]

It is interesting that the test version works better than the brand name.

I know there was a lot of paper work that needed to be done.  I am not sure what it would take to get the test version unless it is a generic form, then my insurance would gladly accept it...I think.  

Not sure on the cost of this stuff.

LA

[Sarahsmom46]

I have been on Ampyra for about 6 weeks now and am very happy, again, very happy with the results.  At first I only got one month RX and if it didn't work I'd stop it, but after the month was over and I was clearly seeing good results in my walking, that was then I decided to refill. I'll keep taking it until there comes a time that I don't see it helping any more.

As far as how your neuro appointment went, it is pretty typical.  Neuro's seem to really only need to see us when there are significant changes in our symptoms or once a year otherwise I get the feeling they'd rather have someone else handle our medications. Actually I find that it is better to have someone else deal with the meds as well since they will take more time to ask how the meds are helping.

Does your neuro's office have a MS nurse?  If so, then he/she would be a better bet for making these types of appointments with.  My doctor doens't have an MS nurse at the time and I really miss that.

I hope you start feeling better and do keep Ampyra in mind if you want to try it.  

Julie

[LATW]

Thank you Julie,
The doctor has a nurse that askes about medications but she can not write scripts or anything.  

I am anxious to see how this medication does for me....if I ever get it.  It was 3 months ago when I filled out the paper work.

LA

[Erin0313]

  Sorry that you had a disappointing doctor visit. I get it - it's a bummer.

  If the doctor had said he thinks things are looking stable or things seem to be going well with the treatment that you are on, or expressed his opinion in any way even a little disappointment, it would have been a better day.

We wait and anticipate these visits with excitement and nerves and need some kind of expression from the doctor one way or another when we finally have time with them.

Lulu had great advice to write it down. I always feel like a dear in headlights when the doctor asks how I'm doing or if I have questions it's like my brain just freezes. I do write things down and luckily usually have my sister there to jump in when I freeze up. Even with all of that she and I have walked out feeling less than great.

I hope that you get your new medicine squared away and it brings relief. Start taking notes now to review in 3 months when you return. I hope that your next appt is much better.

Hugs,
Erin :)

[LATW]

Hi Erin,
Thank you.  I get that deer in the head lights feeling too and that is what happened today.  

Even if he still came in quickly and did his exam, if he would at leave give an opinion that would be good!  

I had a couple of new symptoms today and no comment on them.  but I should have asked...he scares me.  He is a nice guy but that hurried feeling shakes me up.  My brain does not work that fast any more!! :~/

LA