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I was diagnosed approximately 2 years ago with PPMS. Prior to my diagnosis, I felt heard, understood and completely at ease with the care I was receiving. Once the diagnosis was confirmed, I felt alone,with the exception of the infusion team
I sent messages to my neurologist attempting to relay the issues that I was experiencing. Unfortunately, I was met with nonchalant responses and a feeling that I was not being taken seriously
Recently, after again expressing my concerns about my… read more

June 10, 2024
 · 
Reactions
A MyMSTeam Member

Sounds like you need to fire your neurologist….just sayin’ 😜 I don’t think any practice should be dismissive of your symptoms or tell you to “do your own research.” A good MS specialist will know all the latest research and will take the time to explain what’s relevant to your situation. Working with your doc should feel like a team effort - you are both trying to achieve your highest quality of life despite your disease. Think of finding the right doc as an investment in your long-term health. And remember you aren’t alone- there is always someone on this site who can relate to what you’re going through.

June 10, 2024
A MyMSTeam Member

This site is a great outlet for you Theron and the only one I know.

June 10, 2024
A MyMSTeam Member

I have a fine relationship with my neurologist, to the point and professional.

June 12, 2024
A MyMSTeam Member

I don't see mine very often, once a year since 2019. But when I do see her she takes her time to listen, answer questions and ask questions. If I felt like I needed to see her more it would not be a problem. I have asked simple questions through the patient portal and got answered pretty quick.

June 11, 2024
A MyMSTeam Member

My neuro is not compassionate. I've had about 6 appointments since diagnosis Aug 2023. My appts average 9 minutes and he has not done a neuro assessment since September. Often questions I write in the patient portal do not get answered or it takes weeks to get a response. I'm trying to find new neurologist but that is very difficult. I take 2 people with me to my neuro appointment who both are frustrated with how my appointments go. Thank God my symptoms are minimal but not having a caring physician in this new journey does not help. I get far more information from the Meet the Expert and other resources from this organization than my neuro.

June 11, 2024

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