As of this am - I am still waiting for the nurse to get back to me regarding the IV steriods. I just think I should go ahead since the issues that are getting worse have been just the last few days. I am just concerned and confused that I have been having the leg issues and such and just now the past few days the eye is getting worse and my speech and word thought is getting all screwed up. Is the speech and thought train (sorry -cant get the ol brain to work right this am) a flare symptom? This is so scary for me - my kids are looking at me when I talk like I have been drinking or something. I didn't know that you could get an in-home nurse apply the IV - not sure how you get this..? We have to drive about 40 miles each way to the hospital to get the outpatient IV so this would really help - esppecially since I only have a ride on Fri-Sun from my husband since he does not work those days. Again - thank you for all your input - it helps to know others are out there that know what I am going thru and I am not crazy.., well , somewhat - hehe. You have to laugh I guess at some point or you go crazy I guess. PS - please excuse if this doesnt read quite right - I just can't get my words out the way I want. thanks.

Your neuro's nurse should be able to arrange for home infusion. I only ever had one infusion done outpatient at the hospital. All the rest were at home with a visiting nurse.

I also want to relay my own personal experience with IVSM. They didn't give it to me right away when the sx first began. The sx just kept getting worse and worse (over the course of a couple of months) to the point where I could hardly walk with a cane. At that point, I finally got steroids.

I had some pretty dramatic improvement within a week or so after the IVSM. The first thing I noticed was that I could very suddenly think again. It was amazing. Then, other things started improving. They ordered PT along with the IVSM and that seemed to really make a difference. In fact, my PT said that he likes to work with MS patients in a flare while they are doing the IVSM or shortly after for the most benefit.

Finally got thru to the nurse and explained in detail how the flare was getting worse with my eye and talking/thought process - besides the really jello like legs. So they were able to find room for me to come in for the infusion - 3 day 1000 mg today. Set up for another on Sat and Sun Mornings also and then go on a 14 day taper down prenisone. I am really hoping for some relief. Nurse stated alot of people will notice improvement on their eyes and thought process after just the first infusion. I realize it won't be a snap of the fingers to get back to beginning point as my nueor dr stated she wanted me on bed rest 4-6 weeks to help reset my body since I was in such a "hole" to dig out of.
Do you know if you have to have drs prescription to get the arm brace type of cane? This is my husbands greatest concern is to have me here alone and fall - which I've done. I am just not stable enough anymore with just the cane and our house is not large enough hall size and such for a walker. Thanks again for all your thoughts and help in getting thru this one.
lindkaye

(((hugs))) I'm so sorry you are feeling rotten. Even though I am in limbo-land with being dx'd with 'whatever' is going on with my body- I do know somethings about steriods.

Steriods is a good medicine and used for various illness'. It is something that they think can help; do it. For some people like me, steriods are a safe-haven with asthma. But for mental health- Yikes!!

If you start to have mood swings, agitation and feel really on edge make sure you call your doctor. Going off of steriods can wreak havoc on ones body/mind. Been there, done that- it really stinks.

Bed rest- definitely. Please take care of yourself. Your symptoms are very similar to the ones I've had every since the first of July. Yucky.

The vision thing is very scary. The vision problems (blurriness/double vision)- occurs during the day when I over do it. Does this happen to you with your vision?

Please take care...

Coffeegirl

Well, I'm still somewhat hanging in there. I finished the 3 day IV infusuin yesterday - with starting the 14 day taper today. While in hospital yesterday, I mentioned I had been feeling like I was coming down with a UTI, so off to the lab for that and waiting to see it that could be part of the problem also. Last time I had the IV, I bounced back and felt great afterwards. This time, I am having such headaches, upset stomach, and very depressed. . I just slept all day today, guess this one might take longer to get over. Has anyone had a flare take longer to bounce back from even after IV? My husband came home today and thought I should be so much better today but I just cant get feeling better yet. I know the neuro said it might take 4-6 weeks bedrest, but guess I just didn't believe her. Has a flare taken long to get over even with IV steriods, or could I just be a slacker so to speak? I just want to feel normal and not sick and tonite all I can do is get emotional, with no chocolate in the house, go figure! Thanks again for your support.

Sometimes I would get instant improvement, and sometimes not much at all...give it time...eat low-sodium for a while while you are on steroids...no more than 2000mg/day. Rest if your body tells you to...drink lots of water. And those canes that give you extra support with arm brace sounds like something that would be better for you than a walker, IMO...
hope you see improvement soon

Hey there! I am so sorry to hear of your flare being ever so nasty to you! In my very first flare I had all these problems ESPECIALLY the speech. My friends point it out for me. lol. I had the slowed speech, stammering/stuttering over my words, also I would try to say "pass the salt" and it would come out of my mouth like "sass the palt". It's like I take the first letter of each word and jumble it around in the sentence. It's right in my head but not right by the time it comes out of my mouth and I won't even notice that I had said something so goofy. I also felt soooo exhausted after saying a simple sentence. It was like that for a whole month, good thing is my speech (for the most part) is back to normal, I still jumble up my letters in my words sometimes, but it's okay, makes for a good laugh

I hope you get to feeling better soon!!!!

Thanks for all the ideas and support - its much appreciated! As you know the old saying - "what else..." well, I have been up all night with what I am pretty sure is "thrush" covering my tongue and throat. Ugh. I'm waiting for the Urgent care to open and have dear son drive me in. I have had thrush before, but not to this degree. My tongue and throat looks like thrush, but feels almost like I have strept as the pain goes down the throat. Then, my one ear hurts and my eye (same one as blurred during flare and on same side as ear) is really bothering me and eye is watering. I read last nite (wonderful internet full of horror stories) that the thrush can effect your esophagus and spread like that so of course my little mind is ticking away......I also read where besides the steriods feeding the thrush, the bactrium I'm on for UTI can cause it too, so guess I'm outnumbered! Only good thought this am is that the IV steriod did help my legs so far - not wobbling around so much! If I have a flare again (trying to think positive) I think I'll ask for the 3 in 1 - steriod, antibiotic for UTI and treatment for thrush - should be at a discount! Thanks again for the support!

Haven't been responding, but, have been following this.

I generally require the 1000 mg dose of steroids for my flares to go away. In fact, even with them, I often end up hospitalized for 1-3 weeks. Sounds like, with an oral dose (possibly lower dose), you didn't fare so well either, although not as severe as I usually get.

Glad the IV steroids helped and that you seem to be doing better.

~ Faith

P.S.: I often take an oral dose, rather than the IV. But, oral doses are often given at only 100 mg, and I take a 5-day course of 1000 mg of prednisone, followed by a taper. My veins just don't do well with IV's.

My pharmacist was kinda freaked out the first time my doc prescribed that, but, he is used to it by now.

Just wanted to check in on you and tell you I hope things are getting better for you,Lindkaye.