How to tell when an attack is over?

[pennstater]

Hi ambicat,

I am sorry you are still in a relapse and struggling. I personally have not experienced what you have. Once, I needed two rounds of IV steroids, but that was it.

There are some people that steroids did nothing for. I have heard of people getting better up to a year after start of flare.

Have they done any follow-up MRIs with contrast to see if lesions are still active? It sounds like your neuro believes they are still inflamed since treating with steroids. The steroids can help reduce the inflammation, which is why some people feel better after. They don't change the outcome of a flare, but may help get thru it a little quicker. I have always been told the earlier started in a flare, the more effective steroids are.

If you have had five rounds of steroids, I can imagine how sick you must feel. Are you sleeping? Fatigue can exacerbate symptoms. What are they doing for the spasticity?
I remember your post regarding career decision. I thought you were symptom free. Sorry that I misunderstood that.

I hope the Ocrevus is approved for you and you can start soon. Let us know how you are doing.

[AmbiCat]

My first attack started on April 20th, and my neuro's been fighting it ever since. I was officially diagnosed on July 1st by an MS specialist, and he ordered another round of steroids since he too thinks it's a particularly aggressive attack, and not usual for someone's first presentation of MS (nearly every symptom of MS appeared within a few weeks of each other, most of them getting worse over time). They're both determined to get it under control, and want me on aggressive medication.

Currently waiting to hear back on Ocrevus, but keeping my fingers crossed that I'll be able to go on it. In the meantime, I finished my 5 days of IV steroids last week (5th round of steroids overall in the past 3 months), but after getting really sick from them, they're just the same as before the round of steroids.

How do you tell when an attack is over? I have no baseline to compare this to - I was fine until all these symptoms appeared at once. I still can't walk right, and have a tremor/shaking in my right foot that makes me limp most days. My right hand is near useless half the time (I can only trust my thumb and pointer finger; the others decide when they want to stop working), the fatigue is overwhelming, I have trouble getting words out in the right order, I have a numb/tingling wave sensation that I'm pretty sure is L'hermitte's about 85-90% of the time, and ON has massively attacked once and recurred twice within 2 months. The lower back pain that comes some days is horrible and nothing helps, and the spasticity that freezes up my hands is unbearable and makes me want to cry. Some of these symptoms appeared a month or two into the attack, which is why they think that it's slowly been escalating even though certain things, like the widespread numbness, have improved somewhat.

On my best day, I might walk almost normally but my right hand and foot will be numb. There's a lot more that fluctuates, but the only thing that's actually improved since all this started is the full-body numbness - it's just my feet and hands that get numb mostly, though I've had some days here and there where my back is numb again.

I can't do more steroids. I'm so sick from them, and I've caught viruses twice while on them, which leaves me so incapacitated that I can't walk. My neuro and the specialist think that I'm still in an attack, but the steroids haven't really helped much past the first two rounds (the third round did clear up the ON, but then it came back, hence the fourth round, which again cleared up the ON but did nothing otherwise). Do steroids just not help some people? Should I start wondering if this is my new normal? Do attacks just plateau sometimes and eventually taper off over a matter of months?

Some people have told me their initial attack lasted up to 6 months, but I'm wondering how I'm supposed to tell that it's over. I can't deal with it if this is my new normal. I went from completely functional and commuting to work via bike to struggling to make it down the hallway at work, and never knowing if something I pick up is going to get dropped. I know some people feel a lot better once they get on a DMT, but there's no guarantee for that since they're not meant to treat the actual symptoms or stop attacks.

I've handled this pretty well. I spent most of my first month crying, and barely blinked when my diagnosis changed from CIS to MS, because I was expecting it. I've been patient, because I know this can take time. But I'm just starting to freak out again, because the thought of this being the minimum debility that I'll have for the rest of my life is just ridiculous. I'd expect this years down the line, but not right off the bat. I just need to know if there's a way to tell for sure, or if it lingered like this for other people. This can't be the new me.