What would you do?

[Waydwnsouth1]

I know the decisions about our healthcare lays solely on our shoulders. Therein lies my dilemma.

I have been experiencing some new sx over the last several days so I called my neuro. I was told he wanted to see me first thing in the morning.

I called my DW to let her know and so she could rearrange her schedule if she wanted to go with me. Well she immediately became alarmed that I may have to take and IV treatment again. She reminded me that I ended up in the hospital the first time (ultimately fluid in my lungs). I explained that should it be a relapse I am having I do not have alot of options when it comes to a treatment (at least to my knowledge). Basically it is ,IV, Acthar Gel or do nothing and tough the relapse out. Now I am stressing over what the right thing to do is.

I know I have to do what is right for me but the way I see it my decision ultimately affects those around me. But, left up to me and me alone I would do the IV. I now know what to expect so I will be better prepared to handle it.

So what would you do?

[techie]

IV

I guess of steroids if I should ever experience another relapse. Your body, your call.
techie

[pjsSissy70]

For ME, IV steroids are too hard on my body. I would tough it out. But thats just me. You do what you feel is right for you. Your the one who knows your body the best. Good luck to you. Feel better

[1042xx]

What would I do?

If the relapse is so difficult that I cannot do much more than lay in bed, I would take the Acthar Gel or steroids. I have been in the hospital twice for relapses and without the steroids I am not sure how it would have ended. It was a very bad case of vertigo. I could not open my eyes without feeling extremely nauseous. After 5 days on IV steroids, I could at least walk, but needed a cane and was on bed rest for 3 weeks.

[Mynamegoeshere1]

IMO

Ok, I'm new to this and have only had steroids twice. After the first time, I said NEVER again, but then, I had an allergic reaction to copaxone and was without medication for a bit so I had a relapse. For me, the benefits far outweighed the side effects so I am just coming off of the steroid crash (as I call it). I'm lucky to have VERY supportive family and I'm on LTD due to how out of control I got before being diagnosed, but it is definitely your call. You are the only one who can make the right decision for you. Do not let anyone bully you into what you should or shouldn't do. My prayers are with you that you feel better soon!

[heliotrope]

Basically it is ,IV, Acthar Gel or do nothing and tough the relapse out. Now I am stressing over what the right thing to do is.

Just out of curiosity, are oral steroids not an option? I don't tolerate the IVs well, so the last bad flare, my neuro had me try oral steroids. I can't get anywhere near a full dose, so it won't break the flare, but it does ease the worst of it.

[KatieDidNOT]

Depends

For me, it would depend on what kind of symptoms I am having. For most flares, I just wait it out and rest.

But if the flare involves my walking or includes really severe vertigo (the kind that involves nausea and vomiting)...off to the neuro I go.

If the flare involves eyesight or optic neuritis, it is off to the neuro (daytime) or ER (nighttime). I do not ever mess with my eyesight...and would consider it an emergency.

Your body...your decision. You will do what is best for you.

Cheers--Katie

[Redwings]

Hi Waydwnsouth:
Most of what we do affects the people around us on some level. What makes your dilemma so hard is that it involves a choice that isn't even medical. It's apparent that you're dreading having to deal with your wife's reactions as much as you're dreading having to deal with the side effects of treating your flare. Your wife -- and your relationship -- will be affected on some level whether you treat your flare or don't treat your flare. I appreciate your dilemma in trying to figure out which effects will ultimately be more tolerable.

I think one of the hardest things about dealing with a heath condition is keeping emotions out of medical decisions. The emotional effects of a situation can be far worse than the physical effects. Conversely, a strong frame of mind can withstand significant physical effects.

What I would do isn't the same as what you would/should do because our circumstances aren't the same. I will say, though, that I believe there's wisdom in the saying: Always put your own oxygen mask on first before assisting others.

[Waydwnsouth1]

@heliotrope I did not mention that I has tried oral steroids be my last IV. The orals did not work.

Redwings..... Very sage advice as usual. It never occured to me that ones relationship is affected regardless of the decision made. And the saying, well, it says it all. Thank once again.

[jbuckz]

@heliotrope I took 1000MG of oral pred for 3 days and it seemed to clear up this nasty 5 month flare-up i have been having, but about 2 weeks later the flare came back. My neuro says that orals work as good as IV in most people.

[Mynamegoeshere1]

Checking in

Hey, I was just checking in on you! I was worried about you because I know how uncomfortable and painful, not to mention how depressed my flare ups make me and I wanted to make sure you were doing ok.

[Waydwnsouth1]

@Mynamegoeshere1. Thank you for the follow-up I appreciate that.

I am doing just fine and I have decided that should I need steroids I will take them. The side effects were great the last time but the benefits were greater. The way I looked at it was "What would have the greates chance of making life better at this moment"? Answer: Steroids.

After visiting with my neuro and having some clinical exams it was decided to do a MRI on Tuesday. He told he thinks that I may have lesions on my spinal cord now. He said as far as the clinicals he did note some weakness in both legs and other tests were marginal.

So now I wait until next week for more details.

[Mynamegoeshere1]

Ok

Keep us posted. You have been in my prayers.

[Thinkimjob]

Love google! Never heard of Acthar Gel before. It sounded really nice until I looked it up. I was wondering where you rub it.

How wrong I was. An injection a day for 2-3 weeks vs 3-5 days IV 'roids? Someone here who's used it might know, does it work better or not?

Good luck.