Neuro appt 2.5 years after diagnosis

[LoveMyBostons]

Hi everyone! I'm going back to see my neuro for the first time since I was diagnosed 2.5 years ago. I have some questions / talking points written down already, but is there anything you would suggest I discuss with her?

I think I'm going to ask for another MRI to see if the Copaxone I've been on for > 2 years has been effective or if I need to switch to another DMD.

I'm also going to ask if she can write me prescriptions. I go to a multi-doctor practice if I need regular doc stuff but nobody there really knows much about MS or how to treat my problems.

I only get 2 office visits under my insurance plan so I really need to make this visit count. Thanks in advance!

[kwarendorf]

I suspect the 2 visits per year are Wellness, or Preventative, visits. These would be covered @100%. I went to the Blue Cross of Michigan site and found this in the Individual Plane Benefits guide.

Preventive medical care and
immunizations: Includes health
maintenance exam, select laboratory
services, gynecologic exam, Pap
smear screening, prostate specific
antigen screening, well-baby and
well-child exams (6 visits per year
through age 1; 2 visits per year, ages
2 through 3; 1 visit per year, ages 4
through 15) and immunizations as
recommended by the USPSTF, ACIP,
HRSA or other sources as recognized
by BCBSM that are in compliance
with the provisions of the Patient
Protections and Affordable Care Act.

Covered – 100% with no deductible,
copay or coinsurance. 90-day benefit
waiting period applies.


I don't think MS treatment qualifies as Preventative, since you already have the disease :-) You can see the doc as often as you like, but have to share some of the cost.

Kyle
Mammography

[LoveMyBostons]

Thanks everyone! Unfortunately my employer doesn't offer health insurance so I have an individual policy thru Blue Cross Blue Shield of MI. I've called and none of their plans provide more than 2 office visits per year.

I'll definitely go in there and describe my problems and ask what she suggests rather than just asking for a prescription without a reason.

Jane - good for you! I remember when I was just starting out w/the Copaxone. I was so nervous but it truly just became part of my nightly routine. I've never had an IPIR and I've only forgotten to do my shot twice in two years. I got a lot of welts in the beginning but those have diminished over time.

[sllowe]

Hi LovemyBostons!

Definitely ask for the MRI! That's an excellent question for her.
And, contrary to what was said, DMDs can and have show to stop the development of new MS lesions as seen on MRI. There are many studies that support this. Heck, it's why I'm taking mine.

Clinically, your doctor may want to note something to support the order for new imaging, and the symptoms you are experiencing may support the order.

Definitely tell the Dr. the problems you are experiencing, and if it's something she can write for I'm sure she will. My neuro even writes me for naproxen for my headaches and neck issues.

Only thing I would steer from is asking if she would write you scrips w/out describing the problems. And, if after you describe, the doctor says you have to talk to a regular MD for it, then it may be something other than relating to your MS.

So, what you can do if that happens is ask her if she would be willing to send a brief ltr to your MD, about what you are experiencing - kind of prod the MD to do something are my thoughts.

Wishing you well with your visit, and that you do indeed get the order for new imaging and that there are no more lesions. Heck you may even be one of the those who experienced a decrease in size or number of lesions due to Copax!

-shell

[JaneK1975]

I agree that two doc visits per year is unacceptable, especially for someone with a new diagnosis such as MS. Please question that limitation.

I just took my 13th Copaxone shot. It's great to year from someone who's 2+ years in.

Best wishes,
Jane

[Lulu54]

Its hard to guess from long distance what you may or may not have   :-)  Do you notice a difference in your body>?  That is the best barometer of all to measure your health.

Two doctor visits a year?  That is crazy - how are you supposed to get quality care?  Sorry to throw these questions at you, Lulu

[LoveMyBostons]

So I could have a bunch of new lesions? Hmmm I guess I never thought about that.

I get 2 doctor visits per year. That includes any office visit. That's part of the reason it's been so long since I've been back to the neuro.

[Lulu54]

The discussion about how these DMD s are working for you is a very important one to have -  if you google "what do disease modifying drugs do for MS" you will get lots of hits that explain how these work.    In additon to reducing the number of new lesions, I believe some DMDs have been shown to be effective enough to allow our bodies to remyelinate the damaged areas.  

http://ms.about.com/od/treatments/a/ms_treatment.htm states

"The disease-modifying drugs have been shown to do just what they claim – modify the actual course of MS. They do this by reducing the number and frequency of new lesions, especially the ones that cause relapses."

there are other sites that also explain a bit better about the course of this disease and the drugs.

Do you get to see the neuro twice a year or during the entire time your have MS?  That would be too wrong in so many ways - you need to be treated by a specialist who can treat you as a whole person.

Good luck,
Lulu

[COBOB]

DMDs do not necessarily slow the development of MRI lesions.  They may effect the relapse rate.  Serial MRIs make sense up to a point.  I guess I;m more concerned with how I feel, not how many lesions I have.

I ask about my medications and what my EDSS is (and has it changed.)  Not sleeping at night and excessive daytime sleepiness (EDS) are a big problem for me.  I take a ton of medication at 10:00 pm every night and I wakeup between 12:30 and 1:00.  

Those are the things I bring up.  Mainly stuff my PCP doesn't seem to understand.

Bob