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Old 12-10-2013, 07:02 PM #11
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I can't take steroids anymore but to get past a flare I do as little as possible physically, sleep and rest a lot and eat healthy. MS flares are typically caused by some sort of inflammation in the system from most of what I have read. So if you can google anti-inflammatory foods you will find healthy things that will promote healing in your body.
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Old 12-19-2013, 09:07 PM #12
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Quote:
Originally Posted by SallyC View Post
Sounds like you could use a new, more compassionate Neuro.
Glad you found a WC that fits into your bathroom. My scooter
just fits. Do you have any grab bars to help you to the toilet?
I have one on the tub and one on the wall, right beside the
toilet and I use both of them.

I hope the Tysabri gives you strength..
i have a grab bar above the toilet, not much help though.

i ended up going to the er after i could not get off the toilet, and called the fire dept. i was admitted, and my local neuro had me get a brain mri. he told me the results were bad, and started me on iv steroids. i considered the "bad" a good thing, as i really wanted/needed iv steroids. so here it is 2 + weeks later and i'm just regaining my strength. hope it stays longer this time. to be honest, i'm not concerned with the long term steroid effect. i'd rather get steroids every 2 months, and not be falling or at risk, than worry about weak bones in 10 years...

btw, the mri said i had "innumerable" lesions on and in my brain...
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Old 12-19-2013, 09:18 PM #13
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Clark-

I am glad that you got some treatment and are home now.

I hear you about the steroids. At a time when I needed them frequently, my then MS Neuro put me on a gram of Solumedrol IV over 2-3 hours once a month. That worked and got things controlled so after 10 months of that I went on my first DMD.

Wishing you improvement,
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Old 12-21-2013, 09:35 PM #14
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actualy i'm in a nursing home right now, still unable to stand . but i'm definitely 100x stronger than 2 weeks ago, i'm so grateful for the steroids. i have not told my neuro in detroit, i'm afraid she may drop me (she;s the one who put me on tysabri). her nurse said no responsible neuro would keep prescribing steroids. my local neuro said he would put me on them if he found active lesions, which he did...

meanwhile this nursing home is plagued with short staff, and good aides are few ad far between...
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Old 12-21-2013, 10:16 PM #15
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That all sounds really serious Clark.
Sorry that you are going through such a rough patch, especially at this time of year. Do you have anyone visiting you in there...hopefully someone who can keep an eye on things, and be an advocate (Pitt bull terrier) if necessary, so that you get the care that you need.

Wow...would your MS neuro actually drop you because you taking treatment that doesn't agree with her protocol, even though you have clearly thought about it and made a decision about it?
That's harsh.

Keeping you in my thoughts and prayers for a fast recovery.

With love, Erika
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Old 12-23-2013, 11:03 AM #16
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So sorry you are going through this rough time, clarkstar. Your original question was about what, other than steroids, help in a flare. You might ask your neuro about IVIG (http://emedicine.medscape.com/article/210367-overview). It's the only thing I can think of that is used specifically to treat flares other than steroids.
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Old 12-23-2013, 12:25 PM #17
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Because my body does not handle steroids, when I had really bad flares, they used plasmaphoresis a couple of times to reduce the inflammation. They basically take out your white blood cells and replace them with donor ones. It did work and gave me a break somewhat, and was better than nothing.
Unfortunately, it doesn't work for SPMS or PPMS according to my neuro.

With love, Erika
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Old 12-26-2013, 11:13 PM #18
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Sorry, wish I had some answers for steroids alternatives. I had them, once for an MS flare, and they didn't do anything for me. Sending some healing vibes your way
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Old 03-04-2014, 04:41 PM #19
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well i am about 3 months post-steroids and am doing great! got rid of the wheelchair a few weeks back, can drive again, and saw my neuro doc in detroit(who prescribed the tysabri), and she did not have a problem with me getting steroids to get me out of the relapse, which makes me think the nurse was the problem, most likely not consulting with the neuro dr. so if i have to talk to the neuro doc again, i won't bother talking to the nurse, i will only speak to the doc...
i had a bout of uti, now i have a kit to perform self caths if i feel i am not emptying my bladder fully

now back to working on my sciatic nerve problem
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Old 03-04-2014, 04:47 PM #20
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Glad to hear you're doing so much better!
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