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?

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. :hug:

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.

I can't offer anything else but I hope you feel better soon:hug:

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

Cindy

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.:hug::hug:

(((((Trish))))):circlelove: Awwwww, I sorry you were in the hospital. I do hope those dam roids help....they better.:mad:

Feel better soon dearone..:hug:

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? :mad: 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. :hug:

Sorry about your relapse sweetie. :hug: 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. :hug:

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...:grouphug:

Thanks for the well wishes you guys. I really do appreciate them and all of you.:hug::hug:

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.

Sorry you had to go through that miserable experience!! My stomach does flip-flops just hearing the word "morphine". I've never had steroids (not IV anyway) and not something I look forward to.

When the BC/BS nurse calls, she always asks if I've been in the hospital in the last three months, and always sounds pleasantly surprised when I say "no". Is it inevitable??

Hope you come up with a solution that feels right to you. There's no perfect asnwer, is there? I'm equally scared of MS and scared of the treatments.

No advice, just hugs. :hug:

I was on interferon's which were not bad, but didnt work for me. I was on C which was great when it was great, and then it all went sideways.

So...just hugs and prayers from me. :hug:

Trish, I am sorry to hear that you have been in the hospital. I hope the steroids start giving you some relief soon. You may need to take the prilosec twice a day for a few weeks. I remember my doctor told me to do that when I was having tummy problems from the steroids and on prilosec.:hug::hug::hug:

Tkrik,

I am hoping those steroids kick in but things do usually get a bit worse before they get better. (I have no idea what my next sentence was).

Sorry for the whole catastrophe. Glad that you are out of the hospital and back here.

In answer to your question, I am on Copaxone w no problems. I may run out of places to put it, though. I have no idea what my next drug could be.

Just get better,
ANN

trish,

i'm sorry you were so sick and in the hospital.
i hope you con't to get better and feel better.

Tkrik -- Sorry to hear you were in the hospital. Roids truly suck! :(
I hope you are back to feeling better soon. I couldn't tolerate interferons or copaxone so the only option left was Tysabri. My neuro last told me there are 3 MS drugs in the pipeline and on the horizon...I hope you find something that you can tolerate. :hug: :hug: :hug:

I wondered where you were, Woman! So sorry it was the hospital. :( *sigh*

I hope your little bod gets straightened around so it works better and you feel better. Many hugs to you, dear lady! :hug::hug::hug:

Thanks, Everyone! I'm finally starting to feel normal after the steriods. They just seem to take so much out of me. My walking seems improved but I still need the cane. My eye still kind of hurts and things still get a little blurry. And my bladder is back to normal. I don't know about my grip strength but I know opening bottles and such is still difficult for me.

All in all, I am doing better and should see more improvement over the next week or so. I have an apt with the neuro next week so hopefully he will note some improvement.

I have gone back and forth on what to do and which meds and will talk to the neuro about the different options. I may give C another try and see how I do this time. I just hate the real back post injection reactions that I was getting with greater frequency. I also am going to talk to him about something different for the muscle spasms and pain. I didn't realize how much pain I have been in with the MS until they gave me the morphine. So, I'm going to ask him about some other options other than Ativan.

Again, thanks!

Are you doing any PT, Trish? That will help your improvement as well.:hug:

We're going to discuss it at my appt. He wants me to see a new rehab. coordinator and start working on a plan for me. That will entail more PT and maybe some OT. Who knows. I'll find out next week. But, I know PT will help I just don't want to go back to the same PT I had seen. She just wasn't in to it and didn't really listen to what I was saying to her.