Talking with Your Doctor - What are Your Strategies?

[MSAA_Staff]

This month on MSAA's blog, MS Conversations, we are talking about what can be good, what can be bad, and what can be frustrating about talking to your healthcare team. What has your experience been like when you have a doctor's appointment, and what are some strategies you have had success with?

[ssdw1958]

Well when I talk to my neoro I feel that I can talk about anything and he knows what I mean he just is that easy to talk with. He understands the MS World if I have questions or concerns about a medicine he will listen and sometimes knows what I mean before I say it.

My PC she is a good doctor but like when I was having an issue with my feet swelling really bad I figured it out before she did. And she never got back to me. I know that is only one thing but sometimes I feel like she has too many things on her plate. Then all of a sudden I have an issue and she calls me right back with the answer. But I need to realize that she doesn’t deal with MS patients all the time. So like I’ve said in the past we are our on advocates So we need to our own situation and keep on the top of our game because we are the patients. But then again they our doctors and they won’t know what is going on with us if we don’t let them into our world.

[CalfeeChick CommunityAmbassador]

If there is something that I really want to express to my dr. I always keep a journal, but add to it printouts of my research. Last fall, I was interested in adding a non FDA med called Low Dose Naltrexone, LDN for short. It is used in larger doses for fighting Alcohol addiction. When used for that it is FDA approved, lower doses 1.5mg to 4.5mg helps our brains allow our natural endorphins😄 come out and give us more energy to fight MS fog and focus issues. In lower doses, it is not FDA approved, but with your doctor's written prescription, a "compounding" pharmacy will prepare it for you. I did my research, even found some research that my own doc had participated in. I went to my appointment fully prepared and left with my prescription and I believe a little more respect from my doctor. So keep a journal and research anything you want to discuss with your doctor. It will help you and your doctor work together with your treatment plan. 👨🏻‍⚕️👩

[Iona60 in reply to CalfeeChick]

Great idea.

[Lilith08 in reply to CalfeeChick]

How well has the LDN worked for you? I’ll need to look into that myself—need help with focus and cognition!

[CalfeeChick CommunityAmbassador in reply to Lilith08]

Lilith08 I think it really helps. I was a high energy, very active person that all of a sudden I felt like a "Slug!" When I went numb and was diagnosed with MS. I take the LDN first thing in the am with a bottle of water. It helps with the absorption, Then wait 45-60 min. before eating, drinking, or starting the rest of my meds. In my research, I read that those that take it at night have sleep problems. I discussed this with the compounding pharmacist and we decided the morning routine would be best. I was fortunate to find a compounding pharmacy within 50 miles and a reasonable price. I get a 6 month RX for around $125. Here's a site you may want to check out: lowdosenaltrexone.org/ If you have questions, please message me. LDN is not covered by insurance.

[ssdw1958 in reply to CalfeeChick]

Ok I have probably asked this question before what is LDN? And what form of medicine does it come in?

ssdw1958

[CalfeeChick CommunityAmbassador in reply to ssdw1958]

ssdw1958 I don't know precisely what is in it, but it works for me. check out lowdosenaltrexone.org/ for more info and read comments above. It is a small capsule and come in I believe in dosages from 1.5mg, 3mg & 4.5mg. I was pretty heavy when doc wrote the rx for me at 4.5mg. maybe it helps with weight loss because I've lost 20lbs! If doc will write RX, you will need to find a pharmacy to make it for you. There are some online, you can call and talk with them. I was blessed to find one within 50 miles of home that I felt confidence in. if you have questions, please message me.

[ssdw1958 in reply to CalfeeChick]

I want to thank you for the information

[Jesmcd2 CommunityAmbassador]

Great convo MSAA_Staff ! Thanks! 😀

I have to say, the hardest part was getting them ALL on the same page as I was!

I have 3 drs, Neuro, PCP, and my shrink.😀 They all have their own specialties, so I keep them there!

And getting my neuro to understand that yes I take a narco and deal with it!😂

When I go see my neuro, I write my 3 BIG questions down 1st!!! And write down my answers! So I have to look back on!

I also find that if I can make him laugh, he will be more open with me! And not so Dr'ish! 🤣

Hope this helps someone!

🤗💕

Jes🌠

[Elizt3]

I write down my main questions in Notes on my phone. I type the answers on my phone as I’m talking to my doctor. I let the doctor know that I’m taking notes on my phone, not texting. The benefit is I can look back at my notes during my next appointment. I just keep adding to the notes with each appointment ( I know I didn’t quite answer the question about strategies for talking to a doctor)

[Jesmcd2 CommunityAmbassador in reply to Elizt3]

I like that idea Elizt3 ! I'm actually thinking of recording my next visit! 😀

And emailing my questions before my appointment, next month. Hat way hey know what to expect.🤔

🤗💕

J🌠

[ssdw1958 in reply to Elizt3]

I have written down in my phone ssomething that has gone on my in 👁 eyes. Well it helped me out because for one thing I couldn’t say the word what was wrong and my neurologist looked at it and shook his head yes and knew exactly what I was talking about. So I agree putting things down in the note section on your phone is a good thing.

[kdali]

I have no issues talking to any of my doctors and I would change MDs if I did. I have had issues with falling through the cracks of the healthcare system, but that’s hard to pin on one person or one office. I just keep calling or emailing until what was suppose to happen, happens. Sometimes I get a number or ask for the next step so I know who to call (or email) if/when the ball does get dropped. Or so that I can just know what’s next.