intravenous methylprednisolone?

[Bonnette]

Well, it was certainly worth a try and your knowledge base is wider as a result. Your doctor has shown himself to be open to different avenues of approach, so I'm hopeful that he'll continue working with you toward a treatment plan that helps.

So sorry your wife continues to have pain!

[willingtocope]

Sat, Aug 4. Finally got up from my chair around 7:30pm. Shuffled off to bed with more difficulty than usual,but I made it. Got up about about 3:30 to pee...normal...back in bed.

Sun, Aug 5. Woke about 6:30. Legs were crossed and stiff. Took about 15 minutes to get them sorted out so I could rock over to the edge. Got standing. Walked to kitchen, made coffe, got into my chair. Legs very stiff and uncooperative. Its about 1pm now...tried to stand...legs are very weak and unsteady.

Not looking encouraging...

[willingtocope]

Mon, Aug 6. Got from chair to bed last night with difficulty. Up during the night and then this morning with normal difficulty. Walked from bedroom to living room with great difficulty> Not sure what to make of this...spasiticity is still severe, but I am moving.

Another infusion next month? I just don't know....

[hlh]

What was the doctor telling you to expect?

It is my understanding that the steroids are not necessarily helpful for the day to day fluctuations and symptoms, but to help slow any downward trend and new "attacks". Therefore, the only way to know if it is effective is to have treatment for a long period of time, and see where you are at that point. Most folks I know take it at least 6-12 months.

For example, if you suddenly developed vision loss in one eye, and weakness in an arm that was new and didn't resolve for days/weeks.... this would be a particularly bad sign. But if you normally have new attacks/symptoms 3 times a year, but on steroids only had a new attack once in a year.... that is still an improvement. Hope that makes sense.

I guess I am just trying to hope that this treatment may be helpful for you in the long run and want to encourage you not to give up too soon. Steroids used this way are for chronic treatment... not for acute symptoms.

Maybe more spasticity meds at night might help too?

Hang in there.

[willingtocope]

Yeah, I'm wondering also. Dr. seemed surprised when I told him the first infusion in July turned my legs to weak to support me. Its like the spasticity went away completely and I was left with no muscle tone at all. Same thing this time.

I am back to being semi-mobile this morning, but with great effort.

I do take an extra zanzflex in the middle of the night (since my wife can't help me out of bed in the morning), and that does seem to help...

[Bonnette]

It sounds like a detailed discussion with your doctor about the treatment and therapeutic goals might be a good idea - you could learn more about how/why he's prescribing and the outcomes he's hoping for, and he could gain a better idea of your responses to date, and what those might mean. At least you'd be on the same page after a talk of that nature.

[willingtocope]

Just got the phone with the Dr. He perplexed by my reaction to the steriods, says we might as well stop, and has no further suggestion.

[hlh]

Originally Posted by willingtocope

Just got the phone with the Dr. He perplexed by my reaction to the steriods, says we might as well stop, and has no further suggestion.

That's too bad. Again, my gut would be to continue with the steroids and instead have a strategy of something to try when you wake up in a bad state. I am not convinced the steroids aren't going to help you in the long run. But of course, this is your decision with your doctor.

Have you had any PT recently? Do you have a physiatrist, who actually may be better then the neurologist at optimizing your day to day meds for spasticity etc..? Like maybe you need to set an alarm for later in the night and take your anti-spasticity medicine then to be ready to get up in the morning.... or to take a longer acting med.... or to have an emergency ?suppository (diazepam) if you can't sit up in the morning to swallow a pill because you are so stiff.

Also, has a PT/OT come to your house to optimize things?

Optimizing your day to day routine for stretching/exercise/meds and having better assistance devices at hand to help you (as well as better "emergency" meds) is a good goal right now. Steroids are for the big picture.... long term. Not for today or tomorrow. If the bed is the place you get stuck, maybe it's time for a trapeze, better grab bars, an adjustable bed, a lift etc...

And I'm going to throw something out there..... have you thought at all about moving somewhere that could make your life easier? Like a condo in a city with better access to therapy/medical care... or even an assisted living place where at least there is someone to call other then an ambulance for help? Are there family you can move closer to, or even move in with? I really think it is time to have serious discussions about this and review ALL of your options.

And I only say this because my father is in a very similar situation to you right now. Of course, my father does not want to think about making changes or his functional challenges, and we are going down the road where a disaster seems inevitable...... I don't want you and your wife to get stuck like we are, by waiting too long to make the best decisions about how to live your life as independently as possible.

Remember.... these are choices you want to make for yourself - while you are healthy enough to make them. Not choices that you want to be forced upon you by not planning for them ahead of time. It is hard... I totally understand how hard it is....

Hang in there.

[willingtocope]

I do appreciate the suggestions. We've actually done most of them. Home health OT/PT, someone to help me shower twice a week, lift bed, grab bars, etc.

Major problem is I can't afford to retire just yet, so I have to keep working. I work from home, but its a small town in the middle of Iowa and moving would be really tough right now.

Strange that last two calls to the paramedics have been the day after the steriod infusions...I've basically been mobile...struggling, but mobile...the rest of the time.

I did send the neurologist a link to http://www.davidwheldon.co.uk/ms-treatment.html and got a poo-poo out of him. I think my next step is to find a doc who will give this a try.

[Bonnette]

It's so tough to strike any kind of balance between work needs and health situations! Wish there was something concrete I could offer. Hlh makes very good suggestions, and maybe in time - when you're able to retire - you can find a situation or city that will be easier to negotiate. So sorry that you seem to be back to Square One.