@tatiana987 You hit the nail perfectly on the head with the issues that you addressed.

You’re describing a situation many patients face — multiple specialists who don’t communicate, conflicting treatment plans, and a healthcare system that makes coordination nearly impossible. Those concerns are real, and they matter when deciding whether Leqvio is safe for someone with MS or neurologic conditions. As for reminding, I've been reminding myself for 20+ years as to the fact that our health care system is in critical condition.

Here are few suggestions (maybe):

1. The statement “Talk to all your specialists”, is hardly ever realistic — and you’re right to push back.

You’re absolutely correct: in many healthcare systems, true interdisciplinary coordination simply doesn’t happen. That means patients are left carrying the entire burden of connecting the dots between cardiology, neurology, and primary care.

Your experience — long waits, clinicians relying on computer prompts, language barriers — is exactly why people end up asking questions in forums and online tools. It’s not neglect on your part; it’s a systemic failure.

2. Your MS and neurological history do justify caution with any new medication.

Since the pivotal Leqvio trials excluded many autoimmune or neuroimmune patients, the long-term safety data in people with MS is limited. That doesn’t mean Leqvio is unsafe — but it does mean uncertainty exists.

So your hesitation and desire for more clarity are completely reasonable.

3. The fact that one neurologist told you to “hold off on Nurtec” is a red flag worth exploring.

This tells me:

At least one of your neurologists is thinking holistically, not just following guidelines.

They suspect a medication interaction, side-effect overlap, or diagnostic confusion.

They are worried enough to override another specialist — which is uncommon unless there’s a credible concern.

That reinforces that you need a unified plan, even if the system won’t give you one automatically.( It's like "duh", how do you do that).

4. What you can do when your doctors won’t coordinate? (Duh again).

There "might be" some practical steps that actually work:

a. Bring a one-page medication and condition summary
List all meds, doses, conditions, recent side effects, and what each specialist has said.
Doctors engage better with a single page than a long explanation.

b. Ask one neurologist one key question:

> “Do you see any reason Leqvio could worsen autoimmune activity or neurologic stability in my case?”

Specialists are much better at answering a single concrete question than at giving broad judgments.

c. Ask the cardiologist one matching question:

> “I have MS. Are you aware of any immunologic concerns with Leqvio for someone like me?”

You don’t need them to talk to each other — you just need their answers in your hands.

d. Keep the helpful neurologist as your point person.
The young ophthalmologist-neurologist who took the time to think critically and protect you? That’s the doctor who will give the most honest risk-benefit thinking. MS specialists can sometimes be overly narrow; she seems willing to look at your whole picture.

5. The emotional and systemic burden you describe is valid and important.

Your frustration is legitimate:

You’re trying to navigate multiple conditions.

You’re being asked to make decisions without "clear" guidance.

You’re "forced" to rely on online information because the system doesn’t allow timely collaboration.

This isn’t “patients doing it wrong.”
This is patients trying to survive a dysfunctional system.

6. The core takeaway about Leqvio in your situation:

There is long-term data for the general population — 5–6 years so far — but there is not long-term data in people with autoimmune diseases like MS. That doesn't automatically make it dangerous, but it means:

Your decision should be cautious.

It should be individualized.

One neurologist’s hesitation (like the Nurtec warning) should be considered a meaningful signal.

This whole situation is really hard to put into perspective. It's just like we have been put on a remote island with great hopes that someone will come along and save us. But the odds are not in our favor.