You know when you go into a PT place, and they start asking questions about you, so that there's something to actually have a conversation about, aside from just doing the PT? That's basically what they would do when I'd go in. they knew that I was really into this British television show, and so I'm sure they'd get me talking about it, so that the conversations while I was there wasn't just talking about the PT.

I noticed that a few of those girls had a tendency to kind of pick on me a bit in reference to my liking the star actor of the show. The kind of picking on that I would get when I was in high school. Where you're not sure if they're doing it good naturedly, of if they were starting to get to where they were actively being kind of nasty about it. I was ignoring it a lot, but with a few of the girls there, it did start to get kind of annoying.

The last couple of months, I'd noticed they were all a bit distracted when I was there. About two weeks before I quit the PT, they told me they'd be moving at the end of february. (I quit PT just before Valentines day) It was basically just a sports medicine PT place, not really a place that catered to people with MS.

If my insurance hadn't changed, I'd go to the spine hospital here in town that has an excellent PT group. (fancy swimming pool with the movable floor, huge state of the art PT gym) That place is now out-of-network for me. So, I have to go see what stuff the new physiatrist will have access to.


I'm going to try to do more stuff at home with exercise. I've been doing some remodels in our house, and my bedroom was one of the rooms that got remodeled. My bedroom now is a lot bigger, and it's got a nice spot in it where I'm bolting a grab bar to the wall, so that I can hold on the the bar and try to do exercises. I have some serious plans for my little exercise spot in my room. (right now I'm using my bathroom because it has nice grab bars in it to hang onto)

A lot of the exercises that I have planned involve just walking in place, and other exercises that I can do while hanging onto a grab bar. Balance things. I also have those rubber thera-band rubberband strips for some exercises. I have weights. I also have an exercise bike. Right now, I am so deconditioned by everything, and not having energy. I just need to do something to get energy to be able to do all of the stuff I want to do.

Really hoping the new physiatrist will be a bit more helpful than the last guy.

I am impressed with anyone who has the patience for PT. I have needed it twice but stopped after the first session. I will be in big trouble if I ever have an urgent need for it such as after a knee replacement surgery. I am such a wimp when it comes to pain from exercise and I don't know why, but it feels as though they are hurting me. All here who have described PT and how it hurts but then you get better is probably good for me.

Wiz,

"Short term pain for long term gain."

That's what I tell my patients, although PT doesn't have to hurt to be effective.

With love, Erika

Physical therapy hasn't ever really hurt me. Even when I had something going on that was painful (the frozen shoulder I had before Xmas)

The last batch of PT that I did, I could feel this flare going on during it. Because instead of things getting easier with exercising and doing the PT, stuff started to get harder. It was really weird. PT usually helps me. But it didn't seem to do a thing for my MS issues this last time around. The PT they did on my shoulder at the same time went great tho.

Just got back from the brand new physiatrist.

I like him. He Rx-ed me a new AFO, for the left leg. (I have one on the right).

He told me about the medicine Ampyra, but then told me he wants to give me a cheaper medication that's compounded, that's made out of the active ingredient in Ampyra. (4-Aminopyridine) Mostly because the Ampyra costs $1000 a month, and 4-Aminopyridine only costs $60 a month. I have to call my neuro and tell him about the 4-Aminopyridine, and if he says it's ok for me to do it, the physiatrist said the neuro could Rx it, or that he would.

That exercise bike thingie that I bought earlier this year, and probably mentioned in this thread before...I showed him a picture of that. He said it looked like a good thing. Told me to make sure I'm holding onto something like a desk or put it in a doorway to have something to hold onto while I'm using it. Since it kind of looks like a unicycle more than a bicycle. Way ahead of him on that. I'm installing grab bars into my bedroom for it. I just need someone to carry it downstairs for me, and put it together.

While we were on the subject of compounded medications. I asked him if he'd ever heard of LDN. He had. He's never prescribed it, but he's heard of it. Said that he's been following the research. He's not planning on Rx-ing any tho unless there's more research. He said he might be willing to look around to find someone who would Rx it tho.

I'm going to have him help me get my hand controls for my car.


and as I'm sitting here, I've just realized that their receptionist never asked me for my insurance card when I got there. Hmmm...wonder what's going to happen when they try to bill me? Maybe I can send them a scan of my card in email?

I actually liked this doctor a lot more than the old physiatrist. So, I'm pretty pleased.

I have an appointment with the AFO making people for next week. So, I guess my dream of being able to wear real shoes again someday is out the window again. Now I'll have matching footwear/legwear again tho. My neighbors are going to give me some hairy eyeballs when they see me walking around outside now.

My bedroom remodel is going nicely. My wall is moved. I finally got drywall on the walls yesterday. I'm still waiting for a door tho. They still need to finish the drywall with mud, and sanding it down, and then painting it. I ordered the grab bars I wanted for my wall from Amazon. Got them yesterday. Exactly the same as the fancy ones I bought for my bathroom a couple of years ago. (lot cheaper than going to Lowe's to get them too. yay Amazon Prime!)

My room is pretty huge now. Bigger than I thought it would be actually. I picked out paint for my walls (blue) and I've got plans for hanging some mirrors that I've had since I was a kid, and I'm going to put up pictures of my old dog on the walls.

I actually had two walls moved. The original wall that I wanted to move. And then the contractor is moving my linen cabinet from the wall it was on it the hallway, and he deleted part of the wall that the cabinet was connected to. Which is now going to be where my little exercise area will be. Deleting that wall and moving the linen cabinet to be over next to my desk is actually a great idea. Since it gave me that extra bit of room. It should make my desk look bigger too. I won't have to walk around the linen cabinet now to get into the bathroom. It's now a straight shot into the bathroom.

I can't wait till the linen cabinet is done. Since I've been storing all my clean towels in laundry buckets for the past week. Plus, I really want to see the paint on the walls.

Maybe something good is finally happening here. Seeing as how I've woken up on the wrong side of the multiple sclerosis the past couple of days. (did an oral prednisone taper the past week, and it's made me very exhausted and a bit screwy in the head the past day or two.)

Glad to see an upbeat post from you today Erin. Your room sounds lovely. But oh that sanding of the mud. The dust! Hope they cover everything.

Your new doctor sounds good. It sounds like he takes the time to really listen to his patients, not just take care of them. He treats the whole person not just the affected area. Great asset to have on your team.

Yes, color sure makes a difference. From drab to fab!

As soon as I'm done checking my email, I'm shutting the computer down and throwing a blanket over my desk.

I just got a laptop a couple of weeks ago (my dad handed down his MacBook Pro) so, I can take that upstairs and have a computer to play with if I want to do stuff that I can't do with an iPad while they're working on things today.

I have an appointment next week with the orthotic people to make the left leg AFO. Actually not looking forward to that, because now I'm going to look like the bionic woman or something. Oh well. It's not any different than having to wear glasses. It's something to help things. But, having to wear at least 3pounds of metal on both legs (apiece...and yes, I did weigh my AFO once) is probably going to be annoying in the summertime.

But, the old AFO probably has a broken spring or two in it, so it needs to be fixed.

That doctor yesterday was really kind of cool. The old one had never suggested any medications to me. The new one said that he's given 4-Aminopyridine to MS patients, and spinal cord injury patients, and it's helped a few of them. It doesn't cure them or anything, but he said that for a few of them, the MS patients, it's given some help to them for some things.

I can't remember where I read some stuff about Ampyra. I think someone here on the forum mentioned that they'd been taking Ampyra and that it was helping them some. So, I know that Ampyra or the 4-Aminopyridine might be helpful in some way. I'm kind of willing to try it. My fear of side effects is not as big as my annoyance at the walking issues I've had lately.

Erin- we discussed it here (or there) as "4-AP." Best I can recall.
ANN

I knew I'd read something on it in one of the MS forums I go to.

Right now I'm frustrated enough with the wobbly walking, that I'm willing to try the 4-Aminopyridine.


and in other good news, the drywall people just did some work on my room and the guest bathroom. (taping, and some mudding) yay! So much closer to a finished remodel. Hope I get a bedroom door soon.

Think I'm going to cry.

I called the neuro, and asked about the 4-Aminopyridine. He told me that it doesn't do anything. He said I'd be wasting $1000 a month if I got Ampyra, and if I did the 4-Aminopyridine, that I'd be wasting my $60 a month. Said it wasn't worth it.

So, I'm kind of ticked off right now.

He did suggest that I call my regular doctor back, and ask for another taper of oral prednisone. So, I just did that.

I am really not in a good mood at all right now.

Kind of hoping I don't have any construction people coming today. Because I just don't want to deal with anyone at the moment. Just really tired, and seriously frustrated by all sorts of stuff right now.