When do you call your neurologist?

[KateM]

I'm curious how everyone else deals with this..

Do you call your neurologist for every new flare or just the really bad ones? Do you try to wait it out? Do you contact them to document the new attack even if you don't intend to treat it with steroids?

I have always waited to contact them for flares until I just can't take it anymore. Usually I am able to push through but a couple of times I have broken down and called, but because by then I'm already a couple of weeks into it, it's generally too late for steroids.

Do they even want you to let them know when you have new issues that are manageable or just submit a list at routine visits? It's all so confusing....

[dyin_myelin]

I would let them know just so it's documented, that way if you file for disability or need to assess as a team if your DMD is working you will have a complete picture.

[Jules A]

I don't call the MS specialist unless I absolutely need something that my PCP can't handle.

[KatieAgain]

I call only if absolutely necessary, but I never wait more than one week if I am headed for a serious flare. Small things I blow off.

[Marco]

It's important to document significant MS events. I definitely call my doctor when I am in a flare. I would also report pneumonia, UTIs and other items as information to the nurse line. When I got shingles in June - I called them. I wanted to ensure I could remain on my MS therapy while I have shingles. This helps keep them make the best decisions about my care and keeps them informed.

All of my other doctors see my neurologist as the top of the food chain. They will often refer medical decisions to her, because MS is my most threatening condition. If I had cancer they would probably defer everything to the oncologist then to the neurologist. I hope your situation improves!

[poppydarling]

My doctor would always get mad if I waited too long to report the start of a flare— there's a lot of information they can get from the timing. He's actually conducting research right now about how doctors may be able to predict a flare or worsening by taking blood tests. Obviously, the earlier you catch the inflammation, the less damage.

That said, I can rarely reach my doctor's office, so that pretty much encourages me to not bother when I'm not feeling well or don't have a lot of energy

I have started using their email service to report symptoms and current condition, and always note that I want the info to go into my file. It really helps at an appointment, when we're trying to figure out when damage or disability started — or sometimes to show that I'm not getting as bad as I feel!

[hunterd]

I am primary progressive so I do not experience any flairs. But I do call my MS specialist whenever I experience a new symptom no matter if it is major or not.

[Mable]

A relapse is breakthrough disease. That means my DMT isn't working and I want something stronger, ASAP. I'm not going to wait for my Copaxone to fail in a big life-changing way if I can help it. One new lesion. One bout of optic neuritis. One numb finger...I'm calling and getting on a more effective med.

[KateM]

Thank you all for the input. It is so helpful to get others perspective. I emailed my doctor through the online office system on Friday evening to inform her of my new symptoms. She responded first thing this morning and wants to send me out for a thoracic MRI tomorrow.