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Posts tagged ‘MS’

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I finally had the follow up appointment with the neurologist. I had myself all worked up before hand, to the point of tears. They sent me information about medication. All the meds were injections. I don’t do real well with needles. When I was in the hospital I kept a blanket over the IV site. I don’t know that I can give myself a daily injection.

Plus, honestly, I was a bit pissed about the whole thing. You know one of my main reasons for losing weight? I didn’t want diabetes and to have to give myself shots! And now, I might have to?

I was reading so many stories about people who were spending $500+ a month on medication. We don’t happen to have a spare $500 a month lying around.

So, the options seemed to be, give myself a shot every day and make us bankrupt, or do nothing and end up in a wheelchair.

I went to my appointment. Can I just say I love this doctor. He said I was doing much better with balance. We sat down to talk about meds. He asked if I was leaning toward anything. I said “Well, I hate needles, so, the one with the fewest shots is the one I’m leaning toward.” He said “Ok, what about pills?” PILLS?!?!?! I said I didn’t get any info about that. He thought for a bit and said “Oh that’s right, your case is pretty severe and the injections tend to be a stronger dose of meds, that’s why I sent you that info. But, you can try pills first and see how those work for you, we can try something else later.” And then he sat down and wrote out the names of all the pills, what they did, what this meant for me (some require follow ups for awhile), the pros and cons,etc. Answered any questions. Brought up price, didn’t tell me the price, just that many of them had help to pay for them because they are very expensive.

Then, he started telling me about a brand new drug…just was approved last month. His office was one running trials. 22 of his patients have been on this since 2003. And, not one relapse. And, only one patient is on any other drug to control symptoms. He said he never even hears from the others about problems. The first dose is IV, 5 day hospital stay, monitored every month. Year 2 is a 3 day hospital stay, monitored every month. After this, you are still monitored every month for 4 yrs total. And, that’s it. Forever, hopefully. With the other drugs, a couple relapses a year is normal. They don’t stop the symptoms, just the progression (or slow it down).

I was pretty excited about this. I asked who was a good candidate for that one. He said “You. You are the perfect person. They are only using it on severe cases, and yours was pretty bad. The FDA though doesn’t want it to be the first course of action, because there are some pretty nasty possible side effects, but that is why we watch you so closely. They want you to try and fail at one or two other meds first.” I said “Well, then I guess I better pick something to start failing while I do my research on this other drug.”

The course of treatment is $160,000…so, see, plenty of time to fail at all the other drugs while we try to convince insurance to cover this. Unfortunately, that most likely means a couple relapses, because the lesions aren’t just in my brain, they are in my neck and all down my spine.

I came home in a much better mood than I left in. I started some research, I thinkI decided on what meds I’ll start out on. But, again, price is a concern. Brad started looking up the info…and it’s our regular copay. Thank God.

So, my options are (worst case scenario here)

injections with a side effect of suicide, but they work well while you are alive.

Pills that don’t work as well and make you look worse (acne, flakey skin, hair loss, weight gain)

An IV treatment that will either make the MS stopĀ or kill me.

Or nothing, and hope for the best, with the side effects of paralysis and/or feeding tube.

More research is needed.


Who Saved Who?


I love this photo.

We got Trixie on November 1. On November 9, I was in the hospital, diagnosed with MS and no idea I’d be in the hospital for 5 days.

That first week, I was happy we had her. And, considering there is a decent portion of the year, I am the only person in the house, we wanted to teach her she was my dog. That first week, I was the only person to walk her, feed her, let her out of her crate, etc. The next week I was in the hospital, and she, apparently, was miserable. Both Brad and Mike tried to take care of her. She didn’t want to eat, she didn’t want to go on walks. She would fight them on walking, on putting the harness on. When I came home, it was another week before she would get more than a foot or so away from me. The first thing I did was walk her. I was using a cane, and it was painfully slow. Brad stayed with me, moving at a snail’s pace. Ready to help me if she started pulling. And, she didn’t. She waited until I felt better to start pulling. We’d walk 1/4 mile twice a day. The next week it was a 1/2 mile. Then 3/4 of a mile. Then a mile. Today we walked 2.08 miles for our first walk. Our second walk will probably be a mile or so.

I admit to dragging my feet about getting a dog. Actually, I originally told Brad no way, ever. I told the kids no. I made fun of Brad for dressing up his old dog, and treating her like people. And, those words have come back to bite me, as I make her better food than some people eat. And, when I am trying to find her a coat to wear on our walks. (It gets cold here! And, she has short fur and shivers!) But, the kids wore me down, and I realized the reasons for my no were no longer valid. She picked us, and her name. Brad had said no pit bulls. You can see how well that worked out.

I was walking her today (it was spitting rain off and on, and about 33 degrees out.). And, I was just so thankful we had her. 1. We got her from a shelter, so, that saved her, and freed up a spot for another dog. 2. I was already walking 3-5 miles a day, before the MS thing, now I have a walking buddy. 3.She gets me up and moving in the morning, whether I like it or not. I don’t get to skip a walk because I don’t feel like it, unless I want a bored pit bull trying to entertain herself in the house all day. 4. Apparently vitamin D is good for helping fight the symptoms of MS. You get vitamin D from sunlight. And, I get sunlight on the walks, that she takes slower than I used to, because she has to smell everything. 5. We don’t have to throw out leftovers anymore. 6. Brad used to have a handgun. I’m not against guns exactly, but I don’t like them. And, I didn’t like them with so many little boys here all the time. He said we needed it for protection. But, refused to even learn how to unlock the trigger. He sold it to his dad. And, I feel so much safer with Trixie here, as a deterrent than I ever did with a gun here that nobody would know about until they were already in. And, somehow I doubt she can be turned against me as easily as a gun could.

The day before i went to the hospital, I was barely moving. I was sleeping on the sofa. I guess she sat by my side the whole day, either standing guard while I slept, or laying there. She loves to lick, but never did until I woke up. Yesterday I had overdone it at the gym, and I needed a nap. I went to lay down, she came and sat by the bed until I fell asleep. Then she jumped up and curled up behind my legs, watching everything going on.

Brad had told the boys they had to save up for her adoption fee. $40 each. I talked to him, and we told them $20 each, and I’d pay the other $40, and we’d get a dog sooner. I’m glad we did it that way, before someone else got her. And, before she’d been there too long and started to get mean, which was the case with the lab I originally went up to look at. Trixie had already been there for 8 months. They didn’t want to give her to me, because the town I live in has a zero tolerance policy for pit bulls. She makes one mistake and she’s gone. I had to reassure them, she was a pet. She would be a house dog. She wouldn’t be tied out, without supervision. We didn’t even have a fence, so there was no chance of letting her out by herself and her escaping.

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