Newly diagnosed

[Bobby mom]

I don't know where to begin. I am angry at the physicians that gaffed me off over the years even though I had Juvenal rheumatoid arthritis and strong family history of autoimmunity. Guess it is best, to let go and move forward. Just started day 2 of iv steroids, no Improvement yet. What is my fate? I know the steroids will deplete immune system. But this complicated by the fact that I am an ER nurse and exposed to illnesses daily.

I am also enrolled masters program for nurse practitioner, but with the dizziness and blurred vision not able to keep up. Not trying to be Debbie downer or woos me I have worked hard to get where I am and not ready to give up on my dreams. So how soon (realistically) can these flares hang around and how soon will steroid start helping?

[mlissa67]

Hi ...

I wanted to respond to your post and tell you I'm sorry you're here. I don't really have an answer as its different for everyone. I too am a nurse. I was recently medically retired from the Air Force because of my MS which my civilian neuro couldn't get under control.

I had many doses of IVSM but never really got relief. I was plagued with vertigo/dizziness for months and that finally went away but the blurry vision has stayed and gotten worse.

I no longer work as a bedside nurse and haven't for quite sometime now, it wasn't safe (I was an L&D nurse). I'm not currently on MS meds because of serious reactions to those available. I'm starting IVIG on Feb 4th and will use that until BG-12 is released or my neuro proves I have Devic's disease which is what he believes I have based on symptoms and MRI results but my blood test was negative.

I am in a PhD nursing program which I hope finish despite my vision. I want to wish you luck in your APN program. Check with disability services at your school, they might be able to help you. Keep in touch, my email is on my profile if you want to keep in touch. Take care

[Bobby mom]

Thank you Melissa

I would like to hear about your upcoming test and progress. My story is still uncertain, MRI suggest ms but am scheduled for spinal on Thursday to confirm or exclude. The secondary diagnosis identified on MRI was a r acoustic neuroma without mass effect.
Thank you for your response, it meant a lot.

Have a blessed day

[mlissa67]

I will keep you posted.

Let me know how your doing especially after your steroids. Sometimes it takes a good week or so after your steroids to really notice a difference. Blurry vision has just stuck. I have bilateral optic neuritis, macular edema was diagnosed in my left eye as were bilateral posterior sub capsular cataracts which thay believe is due to all the steroids I took.

I'm around if you want to talk. My email is in my profile. I was diagnosed very quickly compared to most, I hope you get an answer sooner rather than later.

Take care

[jmartin0424]

Hi!

I was on steroids during both of the attacks that I have had since November. The first time, it was a 5 day stretch, second was 7. The first time, it was day three when I noticed my symptoms stopped progressing, the second time it wasn't until day 6. Hang in there! It was a major difference between the day I went to the ER and two weeks after the steroids! Give it time and hold on to hope that things will slow down and hopefully start to get better. Just hold on!

[mselinida]

Steroids helped me slightly the first time I took them (after a month or so) and then never again. I did about 8 treatments total (all IV) before my neuro finally gave up.

But all is not lost. The remitting part of MS can make all these symptoms go away. That's way better than anything meds can do.

If it helps, I had vertigo, L'Hermitte's, MS Hug, pins and needles throughout my whole body, non-working right when I was first dx. And those symptoms went away and have never returned, 13 years later.

Don't panic. All is not lost. Take it one day at a time.