New Here and Scared

[WritingSpider]

I am 27 and newly diagnosed. My hubby and I have five babies. One is a newborn and one 2. So that's been hard handling with so many depending on mom.

I had a flare before but we couldn't really call it ms until recently.

Started this time with optic neuritis and hemifacial spasm which that part is only getting worse. The twitch that is. But three days into steriod ivs I got really dizzy where the room was spotting black, I am weak, twitching, shakey, feel so weird in my head and like I can't find words or think straight.

Is it normal to have more symptoms pile on during a flare even after treatment? Or could some of this be withdrawal from the med? I have been off of it for four days but I was on it for five days total so I guess it has half life?

I am so scared that I am going to turn to die or not be able to take care of my family. I don't know a whole lot about ms but I really thought that it was one symptom at a time so it scares me really bad.

Sorry thsis is so Debbie Downer. I just don't know who to talk to.

[tired_teacher]

Bless your sweet heart. My neuro always told me that steroids would take you to the main bottom before they took you to the top. (I am sure not everyone is affected this way.) Your episode with steroids reminds me of my first. Did you take a taper? With this steroid treatment, you should bounce back to yourself in a few days. Symptoms have no mercy on us.

When I was first diagnosed, I I depended on the people here at MSWorld to give me some hope and understanding to what was going inside my body. They are wonderful!!!

Feel free to post often. They will surely do their best to help you.

[lorib]

It sounds like you have your hands full! MS is a tricky disease and there are no easy answers. When my MS is active the symptoms tend to keep piling on until I finally it stops. That's the crappy part. Fortunately (or unfortunately) it tends to go back to the same areas that it has already attacked. Maybe these areas are "weaker" because of previous damage or easier for my immune system to attack. I don't know but I think MSers usually have the same symptoms with each exacerbation.

I'm not sure how long it takes for the steroids to actually work. That depends on the person usually. They used to work for me after a few days, but then with my last relapse they didn't seem to work.

Were your steroids done IV? Did you have a taper? If you don't gradually decrease the dose of the steroid you'll probably go through withdrawal which makes me feel like my MS is active again.

The best thing you can do is take things one day at a time. Try not to worry about not being able to take care of your family down the road because chances are you will recover from what's going on right now.

Feel free to post any questions you have! Others probably have the same question.

I wish you the best!

[mommyto3angels]

I feel for you! I was dx'ed within weeks of having my 3rd baby and it was hard to deal with to say the least. Luckily for me my oldest was 10 years older than the baby so he was a big help and my step sister was around alot. I was so independent before the diagnoses. I had to learn quickly to accept help. I also had to learn not to expect perfection out of myself.

These were the hardest thing for me

Your house will never be spotless again unless you hire someone else to do it for you.With medical bills thats probally not gonna happen lol

Your gonna need to accept help from people, you can't do everything yourself

Your gonna be a ** sometimes, pain causes alot of mood changes and MS causes depresion.

Be ready for surprises, You never know what each day will have in store for you!!! Infact You never know what each hour of each day will bring

Don't feel bad telling people NO!!! You have to learn to put your health before everyone elses happyness. There will be days when you just can't go out and do things. Don't feel bad because you can't do the things you use to. This one is easier said than done.

And please keep talking to others with MS it will help you to understand your diesese. You can't depend on your dr's. Sometimes they are idiots. People on here post some very interesting things, and because of what I've learned I'm able to talk to my Dr more openly and understand him. He treats me with more respect now than when I was first diagnosed.

Take your health and treatments in your hands and be very proactive with your dr's. Don't let them dictate to you.Ask questions until you understand everything, if you might forget take a notepad with you. Good luck and please keep in touch

[Jules A]

I just wanted to say hi and welcome. I'm sorry you have to be here but glad you found us. Hugs, Jules

[Thinkimjob]

You're not going to die, not from MS anyway. The whole thing sucks, but odds are you have many, many, many good years ahead.
Don't feel guilty or try to overcompensate. It's no-one's fault, and definitely not your's.

[aitch10]

That is awful. I am so sorry

I don't know about the half-life of prednisone, but I know that my symptoms and frequency of relapses increased after having my first son and the steroid infusion I got when he was 18 months old did nothing to help.

Didn't make things worse, just didn't help like the previous time I'd had an infusion.

It's all scary. I'd recommend speaking to your neuro about your MS symtoms and the symptoms that seem to have come about after the steroids.

Good luck and hugs.

[zenlightenment]

Hi WritingSpider, and welcome to our group!

I want to let you know that in most cases your symptoms will subside, although they may return from time to time. I have lived a very full and active life, and was Dx with MS before having two beautiful children. I did have some relapse after having both children; that's because your immune system is gearing back up after the baby is born. Your immune system dampens naturally in order to carry something foreign to your body (your baby). You probably have gotten that information before now...but in case you didn't...

Fear, worry and stress are not helpful at all for MS symptoms. Besides, all of those things running in your mind may or may not come to pass and will or won't without you worrying about it, so kiss your babies and your hubby and enjoy the ride. It's kind of interesting (if you want to look at it that way, and I choose to) how your body reacts and little things you may have experienced before that now you attribute to MS.

Please check out other posts, you may find you have quite a bit in common with others here. I hope you visit here often for support and information.

Namaste <3

[Tig686]

Please don't worry so much, I know its a lot to have on your plate. Ask your doc. about tapering (we call it step-down) taking prednisone by pill. I had that after all of my iv steroids, I'm really good at panic attacks lol. Try to come back on and ask as many questions as you like. Everyone here has been so nice to me, I really appreciated it. I haven't been on in a long time, I'm glad to be back.

[WritingSpider]

Thank you, girls, for your warm support. It's been up and down but I think googling may be my worst enemy. I have never done well with not being in control. Was very OCD, literally, before all this.

Again, thank you all so much!