Tammy

For us i think it’s more reasonable for use by a PCA, not ourselves. This way people aren’t hurting us getting it on

Awesome! Yeah I had a follow-up appointment with my neuro today to see how everything is going. I told him I haven’t had any GI issues and told him about the oatmeal. He said it very well could be the reason why I haven’t had any problems in that department. I’m just gonna keep on doing it LOL. Plus it’s good for you too. I just get the easy ones…[Read more]

I swear by the oatmeal and will not stop eating it for as long as I’m on the medication

Question… Does anyone know if there is a way to test whether or not your smn2 protein has increased after starting risdiplam? I thought I read somewhere that somebody posted their number had gone up one number. But maybe it was in reference to something else. In other words, if I get a genetic test before starting risdiplam, and my number is…[Read more]

They are difficult to put on but if you have a PCA who knows what they are doing, they should be able to do it correctly. They also make a device that you put the sock around and then just simply slip your foot in and pull the device out. You can get it cheap on Amazon. I think it’s called a compression Aid or something like that. Also sometimes I…[Read more]

How long after starting the med did you get the rash? I’ve been on it over a month already which is strange. I would have thought it would have happened right away is there was from that. And I don’t typically have many allergies at all to food/meds or anything. But I do have sensitive skin. My doctor put me on a prescription steroid cream…[Read more]

I should elaborate a little more on what I just said above. In other words, I have been on it over a month with no issues. Not even diarrhea. That’s why I’m wondering why and isolated rash now. Or maybe it’s just a coincidence and it is totally something else

Ohhh ok. Got ya. Does anyone know if you have to get blood work every so often in order to keep approval from insurance for each new prescription. In other words after I use up the 5 refills I have now, I have to get another script. Do I need anything else along with that?

She is right, you wouldn’t be able to reach the unlock switch from your side. However you could possibly ask them to put the unlock button closer to you. There is also an emergency unlock lever directly on the floor lock system itself. In case the button fails. Which has happened to me a few times. Usually it’s just because a wiring somehow got…[Read more]

It’s so good! I swear I would drink them twice a day if it wasn’t $3 a bottle. And they are like never on sale LOL. Even if you do the monthly subscription from the website directly, it’s still way too much

I posted something in another thread about the issues people were reporting about diarrhea. Not sure if anyone saw. But figured I would post it in here too as it could be helpful to somebody else. Prior to starting Evrysdi I heard all the complaints about diarrhea, so I decided that I would try to do my best at preventing the diarrhea from the…[Read more]

What paperwork are you referring to? Just want to make sure i didn’t overlook something on my end with anything. I didn’t do any paperwork other than the genetech start form. But maybe you’re talking about something else that doesn’t apply to me.

I tried a couple doses of creatine but got scared about the possible liver damage warning so i stopped. Did you doctor have any concerns about that or did he/she think the risk is low? I may ask my neuro about it & see if he thinks its worth trying again

Yeah try the collagen water! It’s good for your joints too so either way, can’t hurt. I like the vital proteins strawberry lemon. Its pricey but only has 3g of sugar from monk fruit. No artificial sweeteners

I know it’s usually considered “frowned upon”, but have you asked your doctor to put you on a round of steroids maybe even just one time per year? I know they don’t like to use steroids often because it can damage your bones but I can’t imagine one packet per year having too much of a negative effect. Although I’m also not a doctor so what do I…[Read more]

I use xyzal. It’s over the counter but my insurance pays for the generic prescription form. Some people say it makes them drowsy but it doesn’t do that to me. You are directed to take it in the evening anyway. I like it because it’s 24 hour and only once a day

I’m on Medicare primary and Medicaid secondary. My Medicare Part D pays for the drug and the Medicaid picks up the co-pay. It really depends on your state though from what I have heard from others. I’m in NJ and I have heard people in PA getting denied with the same insurance. I did get a lot of prep advice prior to starting the medication from…[Read more]

Yes! It’s like who the hell wants to make small talk when their eyes are barely even fully open? Luckily all of my caretakers are understanding of this as I gave them ample warning before they even started working here LOL. People don’t think what it’s like to have the shoe on the other foot. How would they feel if we were coming into their…[Read more]