New to MS

[Addmancan]

About 3 weeks ago I was diagnosed with CIS suggestive of MS in the ER. Since that time my symptoms have gotten progressively worse. 6 days ago the neuro prescribed 1250 of steroids per day for 5 days. I felt very foggy on the steroids and when they were finished I feel like I'm just continuing to worsen. I've become short of breath and I feel intense pressure on my face and head. I have been unable to work since the CIS diagnoses. I often feel drunk and disoriented. The neuro went through my history from the last three years and is quite sure it's MS.

Will this his ever get better or is this just my life from now on.

On anther note I've had to tell almost everyone I know are the flare has been so sever and I've been home from work all this time.

[Seasha]

Welcome to MSWorld, Addmancan!

You have come to the right place to voice your concerns and questions about MS, although I am sorry you are having a rough time. I think most of us have been in your shoes with our first flare and questions surrounding this. Rest assured that, with time, the flare will lessen and it won't define the rest of your life.

Steroids can help, but they come with their own set of side effects - many of us feel worse before we feel better on them. Time (and yes, patience!) is needed here - it can seem like eternity, but you will feel better!

Hang in there and keep us posted on how you're doing. If you are thinking of starting a DMT in the future, the Medication forum has lots of good information.

We are here for you to lend any support you need!
Take care

[juliaruth323]

It gets better

I was dx not too long ago and from my own experience it gets better. It feels like the whole world comes crashing in at once with the dx and my neuro was amazingly reassuring in explaining that stress also plays a big roll in some peoples symptoms. So your first flare, with your new (or waiting for the "definite") dx, is often a bad flare. Your body is also getting used to medication its never really been given before in really high doses.

My body FREAKED out on steroids. Im doing 1 day infusions each month for 6 months. Im on month 5 now. For the first 3 months I had pretty much everything you explained and intense pressure in my diaphragm. The past 2 months haven't been as bad. Most importantly my MS symptoms are so slight, if i didn't know i had ms i really wouldn't even be bothered, and probably wouldn't even think of it.

The biggest thing that helped me was having a team I trusted - Neurologist, Neuro-opt, Husband-support team, and having an outlet for my stress. Since i couldn't run (because it would make my symptoms worse) I journaled. It helped to center me and keep me from spiraling.

Also, remember once you share your dx with someone you can't take it back. People often think MS is an instant disability, when in a lot and most cases your symptoms get much much better. But your Dx is now out there, the way to keep them from putting you in a box is when you do tell them, also educate them. Find out what MS is to you, how your MRI and lesions look, and how you react to the steroids. A lot of peoples symptoms start improving in a few weeks.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **