Diagnosis

[AmandaP61]

Hi, I'd appreciate your opinions info 're your first consultations 're diagnosis etc. Information is power so I'm told, thank you.

[Myoak]

Hi, I'd appreciate your opinions info 're your first consultations 're diagnosis etc. Information is power so I'm told, thank you.

Hello Amanda,

I recommend checking out the following link. Please note that the site is in England so the question of "am I eligible for a medication" may be different in a country with national healthcare. However, I consider Dr. Giovannoni one of the world's leading MS professionals. His opinions and desire to educate those with MS have proven extremely helpful to me over many years. I think you will find this site quite helpful...

https://sites.google.com/giovannoni....speak-dmt/home

"The objective of this microsite is to help MSers (people with multiple sclerosis) understand the issues that need to be considered when managing multiple sclerosis, for example when starting, or switching between, disease-modifying therapies (DMTs). The site is simply the opinion of Professor Giovannoni, an experienced neurologist who specialises in multiple sclerosis (MSologist), who currently works in the National Health Service (NHS) in England. We hope after exploring this site you will have a better understanding of what is required to take control of some of the decision making around your management. Ideally, we would like to empower you to self-manage your MS, hence MS-Selfie."

Questions

Before making a decision about DMTs you need to understand MS and the principles underpinning the decision-making processes. i.e. you need to know the answers to the following questions:

What is multiple sclerosis (MS)?

Am I sure that I have MS?

What type of MS do I have?

What prognostic group do I fall into?

What is the risk of not being treated with a disease-modifying therapy (DMT)?

Do I have active MS?

Am I eligible for treatment with a DMT?

What is the difference between maintenance-and-escalation DMTs and an IRTs (immune reconstitution therapies)?

Do I understand the difference between short-term intermittent and long-term continuous immunosuppression?

Do I understand the concept of treat-2-target?

What are the attributes of the specific DMTs?

[Myoak]

Gosh, you are in the UK! How silly of me not to have noticed!

Then the site I linked is perfect for you.

Best!

[Mamabug]

Welcome to MSWorld, Amanda!

It's a wise decision to prepare for your visit with questions.

[Jules A]

Hi Amanda,
Welcome. What I can share is the first few months/year can be emotionally charged. Know that the rawness will subside.

Be wise and keep MS in mind as you plan and strategize for your future but also keep living your life! I've been blessed to have done amazingly well, something that surprises and humbles me every day. I wish the same for you and everyone.

[Seasha]

It's a wise decision to prepare for your visit with questions.

Welcome to MSWorld, Amanda!

To help you prepare for your visit, you might want to read over some important considerations in this link https://multiplesclerosis.net/living...t-appointment/

I had someone with me to take down notes as I was so overwhelmed and wanted to make sure I retained all that was said.

Good luck and let us know how it went!

[pennstater]

I second Seasha's suggestion. It really helps to have someone else there to take notes. It can be information overload.

Good luck with your appointment.

[MermaidOP]

I will make an organized list of my concerns before an important appointment. It helps me to make sure I ask about all my concerns. I leave space for some notations, but my doctors always give me a lengthy "After the Visit Summary" which includes a lot of information.

I don't usually need a note-taker or another listener at my regular neuro appointments, but I certainly did, and still do, at the oncologist and the cancer surgeon. I felt that another informed advocate really helped me to make some very emotional decisions about my treatment.

In addition, having a person who is close to you there to hear a diagnosis, prognosis, and treatment consequences helps in the future. That person will need to know and understand in order to "get" what you are going through.

Good luck with your appointment.
Stay lifted,
Mermaid Susan