Patients Multiple sclerosis
Topic of the discussion
Posted on 5/25/20 7:14 PM
Hey guys long time no see. I have been trying to cope with some really hard stuff, but I am feeling a bit better now.
I was wondering the other day... Did you have a say in deciding your treatment?
I feel like doctors only tell us what will 'cure' us, but never try to give us the chance to understand by ourselves what are we going to take and if we do want that or another thing...
Am I the only one who feels this way?
Beginning of the discussion - 5/26/20Did you have a say in your treatment? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/did-you-have-a-say-in-your-treatment-1959
Posted on 5/26/20 7:09 PM
@1988MS Hello 1988MS, thank you for starting this discussion. Unfortunately I think this can be a common experience among patients across all illnesses. Many feel like they don't have a say in their treatment and are just told what to do or take. Let me tag some members who can weigh in!
Hello all, I hope you're doing well. What has your experience been with your doctors regarding your treatment? Do you feel like you had a say in your treatment? Were you given the chance to weigh in on the medications you were to take or treatments you were to undergo? Feel free to share your thoughts and experience here!
Posted on 5/26/20 7:16 PM
@1988MS @Courtney_J I think for me, at the beginning when I was first diagnosed I didn't know anything about MS and it was all so overwhelming and I was in a sort of shock that I just took and did whatever the doctor told me. I think now having had MS for many years and being a part of a MS community where I can read others' experiences I'm "wiser" and know more about treatment options and possible side effects. I feel now I'm more educated about my disease so I can question or negotiate with my doctor if I don't agree with an aspect of my treatment.
Posted on 5/26/20 10:42 PM
My doctor has always given me information on all the MS drugs so I could make an educated guess. I’ve only been on 2 medication. First I was taking an injectable for 10 years now I take a pill form. My doctor is awesome I drive 5 hours round trip to my appointments with her twice a year or more if I need to be seen.
Posted on 5/26/20 11:32 PM
Yes my Dr has MS he gave me all options available to me because I am also dealing with an autoimmune arthritis as well he has made me a part of my treatment
Posted on 5/27/20 4:36 AM
During my "probable MS" diagnosis it seemed like if I didn't take what was suggested that I was doing something that would delay my prognosis further so basically anything they suggested I st least tried. It was scary because I have a huge list of allergic reactions to meds now. But since my diagnosis my doctor is very informative. He has amazing bed side manner and has health issues so we discuss options and decide collectively. I definitely think this is common in other disease. My mom had breast cancer, my son has had CKD since he was born (23 now) and my husband has diabetes, thyroid, hypertrophic cardiomyopathy, and in all these I feel the "suggestion" is presented as "the choice" now with that said i use to work in medical office and thats what drug reps do. They present doctor's with a medication and give the doctor incentive by gifts, compensation etc to choose their med over another one. So it's important to ask these questions.
Prayers to you.
Posted on 5/30/20 6:19 PM
Coming from a nursing background I was able to speak professional to professional with my neurologists and discuss the pros and cons of treatment and I was able to understand all the data presented to me. So my doctor and I as a team picked the best plan of attack for this disease.
Posted on 5/30/20 6:27 PM
My doc didn't give me any choice. I was on one treatment for years. Last time I saw him asked if I could try something else. That was a big NO! And then thanks to the pandemic he closed his practice permanently, so I'm out of a doc. I have refills left on the current treatment for awhile. My current primary is an idiot, doesn't know much about anything but my insurance changed and I'm stuck with him. Well, kinda went off on a tangent. It's the closest to a conversation I've had in weeks! Sucks when you're the last one left in your family....
Posted on 5/30/20 7:33 PM
@1988MS At first I let the doctors tell me what to take, After having a bad experience with one drug, another Neuro years later tried to put me on that same drug again, He was a bully telling me he went to med school and knew what was best for me. If I was gonna be his patient I would do as he told me. Well guess what, I was no longer his patient and since then I stand up for myself and have a say in what the Neuro puts my hubby and me on, Educate yourself and find a doc you can talk to,
Posted on 7/15/20 7:44 PM
@MyMS55 That's awesome that you had that background to guide you and understand everything! I was so stunned by my diagnosis and lost that I just let my doc guide me and took what he prescribed. With the years that have gone by I've gotten more informed and together we've figured out what works and doesn't for me.
@thefirstsbear Wow I hope you've been able to find a new doc! I hate when doctors are like that! They may have gone through many many years of education and have a big degree, but that's not an excuse to be rude or not to listen to you!