What set it off?

[willingtocope]

Had an MS(?) attack last night.

I've had a couple of weeks of getting in and out of bed with no problems. Got up yesterday just fine. Coffee. Got a little work done. Ate some guacamole and chips during the game. Went to bed. Got in with no problem.

About midnight, I woke up with the chills and spasticity. Not terrible, so I just waited it out. Around 5, I needed to go to the bathroom. Legs were completely immoble. Called my wife to help me up. She sttod me up, but I couldn't move. Eventually sat back down on the bed. Waited awhile. Tried to stand again, and my legs collasped. Wound up on the floor, legs bent under me. Much pain.

Paramedics came and got me to my lift chair in the front room.

I'm sitting here now.

What set this off?

[Bonnette]

That's the thing, with MS you can never be sure what triggers an attack. It's as if there's a preset timer hidden in the body that goes off according to some schedule all its own. Most of these exacerbations happen at night, too, which makes sleep anything but a relaxing prospect.

I remember your having a similar experience several months ago, when you had a sudden fever spike and were immobile for awhile. If this new attack doesn't ease off within a couple of days, I'd see a doctor to be sure that it isn't due to something other than MS.

[SCI-Nurse]

So sorry! If we knew what caused MS exacerbetions we would be a long way closer to preventing them.

Are you still weaker? If the change lasts less than 24 hours it is called a pseudoexacerbation, and is much more likely to be due to something like overheating. Did you have a fever when you had the chills?

(KLD)

[willingtocope]

Originally Posted by SCI-Nurse

So sorry! If we knew what caused MS exacerbetions we would be a long way closer to preventing them.

Are you still weaker? If the change lasts less than 24 hours it is called a pseudoexacerbation, and is much more likely to be due to something like overheating. Did you have a fever when you had the chills?

(KLD)

Its like 5pm here now, and I'm able to stand and move my legs. Not sure about walking. Getting stronger as the day has gone on. I don't think I had a fever and actually we turned the furnace down last night. Felt great when I went to bed.

[MSWIFE1]

I'm sorry to...maybe steriod treatment is necessary.

[Bonnette]

I am so glad to hear that you're getting better!

[willingtocope]

Thanks! Just annoys the heck out me that this crap only lasts 24 hours. i'm up...I can walk (slowly, with my walker as usual). Its tough enough gettin thru the week...getting in and out of the shower, the bed, getting dressed, wheelchair at work, all that. Just when I get a routine going...wham...I'm immoblized for a day.

I know there are people who are much worse off than I, but its just so frustrating to get to the coping stage, and then get smacked down again. And, I usually wind up hurting my wife when she tries tto help...

[Bonnette]

Originally Posted by willingtocope

...its just so frustrating to get to the coping stage, and then get smacked down again.

Right, it's like operant conditioning in a laboratory. You never know when something like this will happen - but you know there's a good chance that it will, and more often than not setbacks occur after long periods of status quo. The tension this generates is unbelievable.

Have you experienced any benefit from the LDN? Do you think it might have helped you to lengthen the status quo period?

I'm really glad you're back on your feet and able to use your walker again. If any good can be said to come of episodes like this, it's that each time something similar happens, you'll be more able to recognize the signs and the likelihood that mobility will return in a day or so. I'm finding a small measure of security in learning my patterns, as at least radically different symptoms are recognizable against the backdrop of whatever the "new normal" has become.

[willingtocope]

Originally Posted by Bonnette

Have you experienced any benefit from the LDN? Do you think it might have helped you to lengthen the status quo period?

Actually, yes, I think the LDN does help a bit. I take 4.5mg at night just before bed, and usually feel just a tad better the next day. My wife comments that my legs are easier for her to manipulate getting me into my wheelchair.

On the days when I know I'm going to need to be extra "un-spastic", like when I'm going to get a shower, I take an extra dose in the morning. After about 3 hours, I can almost negoiate the 4 inch shower lip without my wife's help and the whole thing goes a lot better.

Now, all I need to do is convince my PCP that 4.5mg twice a day won't hurt me. I realize the literature says that anything beyond 4.5 was "unproductive", but I would bet the patients in that study were nowhere near my size.

[Bonnette]

Those are really encouraging results! I don't see why you shouldn't have a trial of 4.5mg twice a day - "unproductive" is a pretty non-specific word, if your PCP is dubious on that basis. It's good that he's proceeding cautiously, and at the same time he sounds open to reason - so I hope you get the go-ahead.