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exasperated...a little by a new exacerbation and steroid treatments!!!!

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Old 08-07-2011, 09:20 AM #1
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Default exasperated...a little by a new exacerbation and steroid treatments!!!!
i thought it was the heat and new sandals!, but, turns out is my second "incident." about a month ago, out of the blue, started feeling wobbly on my left side. since it has been crazy hot in dc and i had too much going on at work, home, waited until last thursday to see my neuro (who is very good and calming). yep, it's incident two on my journey...the weird left side trunk numbness (felt like a searing heat rash too), the foot drag (which is what finally clued me in to make the call)...all a new incident.

so on day 4 out out of for iv steroid treatment. not completely unpleasant, but time consuming. symptoms had begun to subside but he suggested steroids to speed it up.

a little sad (was hoping would go a good LONG time w/o second incident)..but at least now: i "look like" i need the blue tag space and perhaps now i will get a cane for the occasional wobbles.

my question for the community...have you found the steroid stuff worth it? i'm not a big fan of drugs, but this disease has changed that (on avonex). neuro doesn't suggest i change med course, but now have to get another mri (with spine and contrast--YUCK)...and i suggested physical therapy? so i can get some fashionable but useful can suggestions...

we're going on a cruise in two weeks, so i'm definitely getting a cane as my balance and standing strength is wobbly..any cane suggestions? thanks!
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1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
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Old 08-07-2011, 11:32 AM #2
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Welcome to the wobbly club Volada.

There are some peeps here with personality canes. I hope they chime in with their suggestions.

As for the use of Steroids, I suggest only using them if your exacerbation is really bad and you either/or can't see or walk. Otherwise ride it out and perhaps change DMDs.

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Old 08-07-2011, 05:41 PM #3
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Quote:
Originally Posted by volada View Post
i thought it was the heat and new sandals!, but, turns out is my second "incident." about a month ago, out of the blue, started feeling wobbly on my left side. since it has been crazy hot in dc and i had too much going on at work, home, waited until last thursday to see my neuro (who is very good and calming). yep, it's incident two on my journey...the weird left side trunk numbness (felt like a searing heat rash too), the foot drag (which is what finally clued me in to make the call)...all a new incident.

so on day 4 out out of for iv steroid treatment. not completely unpleasant, but time consuming. symptoms had begun to subside but he suggested steroids to speed it up.

a little sad (was hoping would go a good LONG time w/o second incident)..but at least now: i "look like" i need the blue tag space and perhaps now i will get a cane for the occasional wobbles.

my question for the community...have you found the steroid stuff worth it?

I personally think so in some cases. I chose it when I was first diagnosed as I was blind in one eye. This time, I chose not too, because the symptoms started subsiding even while I was going through doctor appointments.

i'm not a big fan of drugs, but this disease has changed that (on avonex). neuro doesn't suggest i change med course, but now have to get another mri (with spine and contrast--YUCK)..

I just had that done because one doctor in the practice thought I didn't have MS. It proved I did, but as I remember it took 45 minutes all together.

.and i suggested physical therapy? so i can get some fashionable but useful can suggestions...

we're going on a cruise in two weeks, so i'm definitely getting a cane as my balance and standing strength is wobbly..any cane suggestions? thanks!
There are lots of great canes out there. Do a search on the internet and see if you can find one to your liking. I was at Rite Aid the other day, and they had some beautiful adjustable canes.

I am sorry that you are having an exacerbation, and hope things improve real fast.

Cathy
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Old 08-07-2011, 05:43 PM #4
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we're going on a cruise in two weeks, so i'm definitely getting a cane as my balance and standing strength is wobbly..any cane suggestions? thanks![/QUOTE]

There is a man in Maine who makes exquisite canes. Maybe you could do a google search there. I am sorry but I can't remember his name.

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Old 08-07-2011, 05:56 PM #5
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I use a cane all the time now. Just tired of people starring at me because I walk like I'm drink. Even on "good" days I take it with me because I never know when I will get wobbly.

I won't do steroids. I just wait the flair ups out and so far I've come out of all of them within 2-6 months. My worst was 6 months. Shortest was 2......usually they are somewhere in between.
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Old 08-07-2011, 06:40 PM #6
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I have to ask- what's the harm with steroids? I know bone density with constant use but, the 1 time I had 1gram x3 days I got so much done by lunch that I wish I felt that way more often. Taste was a lil bad but worth it.
I guess my question & yours should be..do the steroids help stop suffocation in our brains?

Contrast's no biggie either. I get it every time. Ask if they can start a butterfly before you lay down if that helps with stick.

edit- Actually a butterfly's no good cause not flexable. Would need to be what they start in me for Tysabri.
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Old 08-07-2011, 07:52 PM #7
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[QUOTE=EddieF;793640]I have to ask- what's the harm with steroids?

Eddie, I honestly don't know why people feel that way because they do a lot of good too.

I have used them in the past but my current use is because of dogs, and they do save a dog from dying when they have certain diseases.

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Old 08-07-2011, 08:39 PM #8
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Steroids, like any medication, can be quite harmful on the body... of course, we also know how great they can be to help get us into remission fast.

Also, like other medications, the more you take them, the less effective they may be the next time.

They are very helpful, and I know they were just phenomenal to help me both times I needed them. Each person's different, and each symptom's different. Some people are okay to 'ride it out', others need the extra help of the steroids.

When I was lying in bed and could not feel my right leg at all (purely sensory - it 'worked', but it was if the leg had been chopped off - scary), I knew I was in deep doggie doo, and I needed help (IV Solumedrol, steroids) pronto.

I didn't rush for them when I developed crushing pain in my noggin though... I went to a pain doctor and got a prescription that helps.

I do know the pros/cons discussion over steroids is much more 'involved' than what I know of method of action of the medication, so I'm certain another will chime in with explanation.

I hope you feel better soon and I hope that the steroids help you.
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Old 08-07-2011, 09:26 PM #9
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Quote:
Originally Posted by SallyC View Post
Welcome to the wobbly club Volada.

There are some peeps here with personality canes. I hope they chime in with their suggestions.

As for the use of Steroids, I suggest only using them if your exacerbation is really bad and you either/or can't see or walk. Otherwise ride it out and perhaps change DMDs.
Already started steroids. Walking has been uber challenging. Breathing and sleeping also impacted. Went w/the drugs!
__________________
1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
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Old 08-07-2011, 09:31 PM #10
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Quote:
Originally Posted by Kitty View Post
I use a cane all the time now. Just tired of people starring at me because I walk like I'm drink. Even on "good" days I take it with me because I never know when I will get wobbly.

I won't do steroids. I just wait the flair ups out and so far I've come out of all of them within 2-6 months. My worst was 6 months. Shortest was 2......usually they are somewhere in between.
I'm working full time in congressional affairs. Have 2kids age 8 and 13. Don't like drugs, but chose the speed it up option in order keep going!
__________________
1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
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