Last reply 6 months ago
Inactive MS treatment

Good Morning ☺️ I was diagnosed with MS October 2017, after experiencing going blind in my left eye in 2015, doctors putting it down to optic neuritis, it then occurred again last October but In my right eye. After having some MRI scans it came to light that having lesions showing in other areas of my brain, but not my spinal cord, that I have relapsing remitting MS, at the moment it has only affected my eyesight. My Neurologist told me that my MS is not active, that these are all old scars showing, but as the time frame was only 2 years between loosing my eye sight he wants to put me on treatment . I’m meeting with my MS nurse in a few weeks to discuss the best medication to put me on, I just wondered if anyone has a similar form to MS as I do and what’s the best medication for it? As I have no idea! I know obviously the nurse will go over this but it’s reassuring to know other people’s opinions ☺️. E.g are there ones with real bad side effects? (I know every body is different)

Thanks! 😊

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stumbler
6 months ago

Hi @danr and welcome.

Inactive MS is just that, inactive. But, MS is an unpredictable condition, so whose to say when it will become active!

Here’s some reading for you, which will explain the various options :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

Present thinking is to hit MS hard and fast. Although some Neuros prefer to start on lesser treatments first and see whether you have further relapses and potentially accumulate disabling symptoms………..


tonyray75
6 months ago

@danr hey…. i had the same experience with my left eye. I was told the same thing about it being inactive. But then I flew to Nashville for a vacay & as soon as we landed my left eye symptom came back. It got worse every day on the trip. As soon as we got back an mri showed I had a new active lesion. I got on copaxone then…and no new lesions since. That was almost 2 years ago.


danr
6 months ago

@tonyray75 that’s really weird you saying about it coming back when you flew out, as mine came back whilst I was on holiday and flew out to Portugal! Probably just coincidence but still strange. Good to hear no new lesions since hope it stays that way!!


danr
6 months ago

Hi @stumbler thank you I’ll have a read! It’s a good thing they want to put me on treatment even though it’s inactive, as hopefully that’ll prolong it being inactive for as long as possible but like you said MS is very unpredictable so fingers crossed!


tonyray75
6 months ago

@danr I’ve read in several places where flying has caused relapses. Not sure why but it seems common.


stumbler
6 months ago

Flying exposes us to all kinds of germs within a confined space. Therefore there’s a possibility of picking up an airborne infection, activating your immune system and experience a “pseudo-exacerbation”

This is a temporary worsening of symptoms, for the duration of the infection.


curious-one
6 months ago

We got diagnosed the same month.

I’m still not on treatment too, got some some plegridy here waiting to be injected but putting it off, argh wish mavenclad was out already!

The dmd decision is a tough one.


novemberrain
6 months ago

Hi @danr
I had optic neuritis in 1998. I was diagnosed with MS in 2017 after developing temporal lobe epilepsy (2 disseminating events in space and time). I have never taken medication for MS although I have multiple longstanding inactive lesions. I am getting a second opinion about treatment but I’ve gone 20 years without knowing I had MS. Perhaps this was the best medication for me! No idea what type of MS I have except it’s currently “benign”. Perhaps that’s why I’m not being treated with meds. Watch and wait MS gah

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