This Is MS Multiple Sclerosis Community: Knowledge & Support

[hijeenie]

My husband has been having a flare up since mid-March (trunk and upper leg numb) and we are on 2 waiting lists to see neuros (appt MS Hamilton clinic June 26th). I have read that sometimes you get IV steroid treatment. How do I know when to bring him to the doctor or hospital for this?He is having alot of discomfort in his side and has been on Lyrica for 2 weeks but no relief yet (75 mg/day).He is really tired and grumpy from the discomfort,hard to get comfortable sometimes.
I will ask for full bloodwork when we get to see a MD to check all nutrient levels but should I add magnesium,zinc,etc now. He already takes D,fish oil,flax,multiB and B12.

Thanks

[sou]

Steroids are considered to speed up the recovery of some relapses, if taken early i.e. during the first 15 days from the onset, but there is not a definite rule. They don't seem to affect the degree of recovery from a relapse, just the duration. Sometimes, of course.

They should be taken if the symptoms of a relapse are unbearable and interfere with daily activities. There is no general rule about when to be taken, as well.

[CureOrBust]

Not so much a need, and as far as I know, its only a single study (ie not duplicated), but have a read of http://www.thisisms.com/forum/drug-pipeline-f13/topic19183.html

[whyRwehere]

I was in this position with my husband last Autumn. He was having a very bad relapse, but to see a neuro would have taken months, so I was instructed to take him to the Emergency room, where he was seen and hospitalized. He had steroids...they didn't make any difference at the time, so I have little faith in them, but the whole experience brought us a lot of help, ie hospitalized physio, and other support. The Emergency room took forever, but was worth it.

[donnamck94]

The hospital near us holds a relapse clinic every Friday, run by the MS nurse. Might be worth finding out if there's a similar set up near you. My husband has responded well when he has taken steroids.

[hijeenie]

I try to avoid the hospitals here in Niagara, they are dirty and old. My husband finally got into our regular neuro and she gave him 10 days of predinsone. Today is day 3 and still waiting to see if it helps. She said "you should have come to see me sooner in the flare-up it would have helped you better". Wow, I called for the appointment March 17th and the date we were given was May 30! He was on a cancellation list and I called every 2 weeks to see if there was a sooner appt. Still waiting for the MS clinic appt from Feb 28th. Just venting, sorry.

[jimmylegs]

ha you're going to mac? that's my ms clinic they don't know much about nutrition in that dept though. or at least, didn't. i haven't been there in ages. when i presented them with my original list of supplements for review in 06, the only thing the doc said was a good idea, was vit d3. they did help me develop my original megadose regimen, but neither they nor the research mentioned balancing with magnesium and zinc. most of my troubles since dx have been the original nutrient depletion due to prior dietary habits, followed by high dose d3 after dx, and not enough of the other things to go with. by 'troubles', i mean my severe dysphagia (magnesium) and major cognitive issues eg spatial stuff, and short term memory (zinc). i took lots of other stuff too but those were the problem items.
if he's been high dosing vit d3 and depleting mag and zinc in the process (and likely calcium also), he will probably have to megadose for a while and then back off to a maintenance dose.
you could try to find a local pharmacy that carries magnesium glycinate. the brand i've found locally is kirkman. taking one with each meal would be a good start. also for zinc, nutrition house has a good product if you have one near you. it's 50 mg zinc citrate, balanced with 2mg copper. that would deliver 15mg of elemental zinc per day so he could take two or even three a day for a week, then back off to one a day in the longer term. you might also consider adding vit e8 complex to hubby's regimen. you can get that at nutrition house too. brand is new roots. if you decide to supplement calcium, i think they also should have something called 'complete calcium' by progressive. i think they have one specifically for men, if memory serves. personally i tried to take calcium but i can't - i think my diet has enough b/c taking calcium makes my muscles go spastic. i'd have to take more magnesium to compensate and that would just be silly.
just fyi on the bloodwork, ask for serum tests. some would argue that rbc is the better assay (i sort of doubt you'll have that problem at mac), however it's serum data that you see all over the research. until there's as much data on rbc nutrient levels, it will be difficult to find solid, replicated info on healthy control values.
also fyi if zinc is down, that means uric acid will likely be down too due to broken urea cycle. that means high ammonia levels - toxic, not good. we know that uric acid is low in ms patients and especially low in relapse. i think fluctuating zinc levels over time may be one factor helping determine whether or not a patient experiences a relapse. anyway. testing uric acid is a 'nice to have' piece of info, not 'need to have', but still - if you can get Ua tested too, great.