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Old 03-14-2012, 06:44 PM #1
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Default Home From Hospital . . .

MS decided to rear it's ugly head to me during MS Awareness week. I ended up in the ER on Monday where they gave me some morphine and started IVSM. They kept me in the hospital until my last dose of steroids today, just to make sure my eye got better and I could ambulate better and my bladder settled down.

I just want biotch a second here . . .I hate getting steroids. They make me so sick. I wish I got the hyper feeling that others get but instead I get more fatigued and just plain sick feeling. I know I will see some improvement over the next few days and then an increase of symptoms and then back down to where I need to be. But still, I so wanted to avoid doing steriods but that was not an option this time.

I go back to the neuro in 2 weeks to come up with a new medicine plan. Copaxone is out and I really haven't been on anything for about a couple of years now. Things seem to be progressing so I am not looking in to other options. Any suggestions? LDN is on my list of things to talk to him about. I'm hesitant about the interferons and some of the newer drugs that are out. So, what do some of you take and how do you like it? Pros? Cons?
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Old 03-14-2012, 06:57 PM #2
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Awww Trish. So sorry you're had another exacerbation. I hate the steroids too but when my eye's involved I'm happy to take them to get my vision back to 'normal' just as fast as possible.

I can't offer advice about the meds because I won't take any of them. I've chosen to simply treat the symptoms as they arise and not fill my body with what I consider .... do nothing for me. I know others don't think the same way as I do, but that's OK, everyone is as different as this disease.

I hope some-one can help you out and I hope you feel better soon.
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Old 03-14-2012, 07:08 PM #3
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Thanks, Anne! That's kind of what I have been doing but it just seems that over the past year or so I've had more trouble with symptoms and am now considering trying something to help slow things down. Copaxone was great but I had too many bad reactions to it. I really am hoping my neuro will be on board with trying the LDN. I printed the study again and will be bringing it with me to my next visit. When I saw the NP at my last visit she didn't say too much about it.
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Old 03-14-2012, 07:16 PM #4
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I can't offer anything else but I hope you feel better soon

I hate steroids and will never go on them again..

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Old 03-14-2012, 07:23 PM #5
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Cindy - I know you just had your round to them as well. They are not fun. But I know that within the next few weeks I will be doing much better and so will you.
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Old 03-14-2012, 08:06 PM #6
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(((((Trish))))) Awwwww, I sorry you were in the hospital. I do hope those dam roids help....they better.

Feel better soon dearone..
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Old 03-14-2012, 08:42 PM #7
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So sorry to hear you were in the hospital, Trish. I hope you'll be feeling better soon. Don't you wish there was something we could take that didn't have to make us sick in order to make us better? Steroids are just the worst and the best thing at the same time.

I've been trying to decide whether or not to continue on LDN. It hasn't made me sick or feel bad......it's just not seeming to be doing as much good as it did when I first started taking it. I had to stop taking it when I had surgery and have just never started it back again. And to be honest I haven't noticed a bit of difference. I can't take the Interferons and Copaxone didn't agree with me either. Too many site reactions. Sometimes we just need a break. Honestly, I'm going for something to treat symptoms right now. The DMD's just do not have a good track record.......with me anyway.

Keeping you in my prayers that you'll get better real soon.
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Old 03-14-2012, 09:16 PM #8
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Sorry about your relapse sweetie. I've thought about what I would take if Copaxone becomes unbearable for me and I think I would opt for going back on Avonex and the once a week flu like symptoms. It was tolerable compared to Rebif. The worst part was facing the dreaded harpoon each week but it didn't leave any marks on my skin either. Get well soon.
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Old 03-15-2012, 12:18 AM #9
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Trisha...didn't say anything here about you being in the hospital...but you know how much you mean to me...I wish I could just envelope you in a big hug and make everything all better. Ahhh...if only we had that Power!!

I hope all the sxs calm down for a time now to give you the opportunity to do some serious research about the various DMDs on the market now and which might delay the progression for you without giving you other issues to deal with...don't forget my suggestion about a low sodium diet for the next week or two, and drink a load of water!!

Know that you're in our prayers, dearest...you are a valuable member of our community here...
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Old 03-15-2012, 12:41 AM #10
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Thanks for the well wishes you guys. I really do appreciate them and all of you.

Once I feel better I will start looking at what options are available and what might work for me. I spoke with a friend of mine today that has MS. She takes Avonex and seems to do well on it. She's going to come by tomorrow to visit and I'm so thankful for that.

I still have the muscle spasms in my legs so taking the Ativan is going to be a regular thing for me now. I hate the idea of it and the neuro said we can talk more about that when I see him in a couple of weeks.

I have not had to do steriods for several years. In fact, this is only my 3rd time ever doing IV steroids. I was in a study at one point where I took 1 gm orally for five days every 4 months or so. The IV ones get me. And, they got my stomach tonight. I'm so tired but so bloated from the steroids I can't sleep. Prilosec should kick in soon, I hope. lol Ativan should kick in soon too.

Again, thank for your well wishes and advise. And, Debbie, I've been avoiding salt and drinking lots of water. The poor nurses at the hospital had to keep refilling my pitcher up and emptying out their "measuring system" in the restroom. But, I know that water and fluids is the best thing for me right now.
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