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-   -   How long would you wait? (https://www.neurotalk.org/multiple-sclerosis/47238-wait.html)

RedPenguins 06-05-2008 01:05 PM

How are ya feeling?
 
Erin,

How are you today? Any decision on the steroids? I hope you're doing a little better. I hate the vertigo. I feel like I need to be wearing a seatbelt while sitting in a chair!

Hope you're well!!

~Keri

Erin524 06-05-2008 03:13 PM

Quote:

Originally Posted by RedPenguins (Post 293552)
Erin,

How are you today? Any decision on the steroids? I hope you're doing a little better. I hate the vertigo. I feel like I need to be wearing a seatbelt while sitting in a chair!

Hope you're well!!

~Keri

I only just woke up at 2pm today, but I think I might be feeling a little bit better. I didnt wake up dizzy, and when I stood up, I only felt a little wobbly for a few minutes. I've been sitting here, wandering the internet, waiting to see if I feel dizzy today.

So far, so good. Maybe I wont have to do any steroids.

I'm supposed to call the neuro tomorrow if I'm still dizzy.


I havent been in a car for several days, so I dont know if my car will set off any vertigo. I think I'm feeling better, so I might attempt to go up to the craft store later this afternoon to buy a new set of knitting needles. See if I get the spinnys from that.

I do still have the weird headache that I seem to get with the vertigo, so maybe it's just waiting to strike me when I least expect it. (after I've gotten into the car and driven a mile away from my house probably)

NurseNancy 06-05-2008 07:45 PM

it's a tough choice erin. i don't envy you having to make it.
but, i'd be more worried about your vision. if your vision doesn't improve i'd definitely consider something.

please keep us posted.

Natalie8 06-05-2008 10:59 PM

Hi Erin, I hope you are feeling better today. :hug:

Erin524 06-05-2008 11:50 PM

Quote:

Originally Posted by Natalie8 (Post 293922)
Hi Erin, I hope you are feeling better today. :hug:

I was feeling better. Starting to feel all spinny again. I'm happy that it left me alone for awhile today before the world started moving me again.

Just wish it would have left me alone for good. I hate vertigo!

I still dont know if I'm going to call the neuro tomorrow for the steroids. I might actually try to wait over the weekend.

I really dont want to have to deal with all the stupid side effects of the steroids. Last year when I did steroids the first time, I absolutely LOVED the way I felt, no numbness, vision improved, I felt GREAT, but then all the side effects started to kick in, and then the steroids wore off and I felt like crap.

So, while I'd love to have my body feel somewhat normal for a short while, I really dont want to have to deal with the side effects. If I call him tomorrow, I think I'll ask him if it will make my vision improve, if it'll help the vision and the vertigo, I might just do it, but I think I have to get past the fear of the side effects. (peeing every 3 minutes does not sound like fun. And my dad was going to tie me down last year because I was bouncing off the walls from the steroids)

Natalie8 06-06-2008 12:17 AM

Quote:

Originally Posted by Erin524 (Post 293941)
I was feeling better. Starting to feel all spinny again. I'm happy that it left me alone for awhile today before the world started moving me again.

Just wish it would have left me alone for good. I hate vertigo!

I still dont know if I'm going to call the neuro tomorrow for the steroids. I might actually try to wait over the weekend.

I really dont want to have to deal with all the stupid side effects of the steroids. Last year when I did steroids the first time, I absolutely LOVED the way I felt, no numbness, vision improved, I felt GREAT, but then all the side effects started to kick in, and then the steroids wore off and I felt like crap.

So, while I'd love to have my body feel somewhat normal for a short while, I really dont want to have to deal with the side effects. If I call him tomorrow, I think I'll ask him if it will make my vision improve, if it'll help the vision and the vertigo, I might just do it, but I think I have to get past the fear of the side effects. (peeing every 3 minutes does not sound like fun. And my dad was going to tie me down last year because I was bouncing off the walls from the steroids)

I can see why you want to wait until the weekend goes by -- if you feel like you can deal with the MS crud. I'm just afraid you are in a flare up. I will tell you that I've done IV steroids 2x. The first time I had a long prednisone taper and it was absolutely horrible. Awful awful side effects. And then I had problems with fatigue, headache, abdominal cramps when the oral ended so they thought I was having adrenal insufficiency and put me back on 10 mg. so I would taper down from that. UGH. So the tapering took a month or more if I remember correctly. The second time after the IV I did no taper at all and it was SO much better--just unbelievably better. The neuro I spoke to today said that some people handle no taper more easily and have way more problems with the oral prednisone after the IV ends. I will tell you that when I did the no taper I did have about a week of feeling pretty funky (tired, felt like a truck ran over me) -- but I bounced back pretty quickly. So you might ask your neuro about an IV course with no taper. I can't even begin to tell you how much better it was and I will never do an oral taper of steroids after an IV again.

Erin524 06-06-2008 01:31 AM

Quote:

Originally Posted by Natalie8 (Post 293943)
I can see why you want to wait until the weekend goes by -- if you feel like you can deal with the MS crud. I'm just afraid you are in a flare up. I will tell you that I've done IV steroids 2x. The first time I had a long prednisone taper and it was absolutely horrible. Awful awful side effects. And then I had problems with fatigue, headache, abdominal cramps when the oral ended so they thought I was having adrenal insufficiency and put me back on 10 mg. so I would taper down from that. UGH. So the tapering took a month or more if I remember correctly. The second time after the IV I did no taper at all and it was SO much better--just unbelievably better. The neuro I spoke to today said that some people handle no taper more easily and have way more problems with the oral prednisone after the IV ends. I will tell you that when I did the no taper I did have about a week of feeling pretty funky (tired, felt like a truck ran over me) -- but I bounced back pretty quickly. So you might ask your neuro about an IV course with no taper. I can't even begin to tell you how much better it was and I will never do an oral taper of steroids after an IV again.


Oh, I think I've been in a flare since sometime in February of this year. Got optic neuritis in the right eye then. (the ON isnt getting better yet) In March, my right foot went numb down to the bone (it's getting better). My vision in my right eye has gotten worse in the past few weeks.

and now this week, I've had vertigo. So, I would not be surprised if I was in a flare or exacerbation right now.

I'm waiting to see how I feel tomorrow, if I have vertigo tomorrow like I've had, I'll call him up and get the Rx. I might not start to take it immediately, but I think I will get the Rx just in case I need it over the weekend.

I think I'm going to ask him for a Rx for some Nexium while I'm at it, because if I do take the steroid, I'm betting it will cause me tummy issues too.

Erin524 06-06-2008 02:44 PM

So, no steroids for me....Yet!
 
Just talked to the neuro. He'd been trying to figure out how to avoid giving me any prednisone since I dont like the side effects.

He wants me to get my ears checked for an actual ear infection, and if there's no infection, to go to an ENT (Ears, Nose, and Throat doctor) to see if there's something physically affecting my inner ear.

The neuro asked me if I was having any problem hearing. Told him my ears were sensitive to loud noises, my tinnitus (that I've had since I was a small child) is a little more noisy than it usually is, and there is some pressure in my ears.

Also told him that when I had mononucleosis in 96, my head got so swollen that I couldnt breathe thru my nose, couldnt hear anything, and couldnt speak for close to three weeks. He's wondering if the mono could have damaged my inner ear somehow and made me more susceptible to the vertigo from things other than the MS.

I dont know if I'm disappointed or not at not getting any steroids today. At least the neuro is paying attention and wants to make sure of things before he starts writing out the Rx for the 'roids.

peachyplane 06-08-2008 11:43 AM

hi ya erin,

i think vertigo is one of the worst symptoms of ms myself. deciding what to do about a flare up is right up there too. if it were me i think i would ask him to call in an rx and then you can pick it up ''IF" things don't simmer down for you.

none of us like the side effects it causes however on the flipside we don't care for sitting on the fence and waiting it out either :confused: if you have the rx called in and there for back up at least you have that choice if you get my drift. nothing worse then imo then not having your neuro at your fingertips and heaven forbid it be a weekend or the middle of the night. with that said i hope you can manage without them :wink:


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