I’ve had both plastic and metal braces; the plastic were harder to find shoes that fit, uncomfortable and couldn’t handle my weight going up and down from the steriods. I’ve now some made by Toeoff, they are lighter weight, easier to find shoes for {though you’ll still have some problems}, and won’t have to be replaced each time my weight changes. They only have a bit of metal mostly like a fiberglass or such, also have thin padding that can be removed to wash or replace when they need. After three years of the molded plastic I was like a little kid when they gave me the new ones. I can spend more time on my feet without out the discomfort, have a better choice of shoes and it’s easier to get them in out of the shoes. When I showed the neuro the new braces he started suggesting them to all his patients.
It’s depressing having to wear them but hey not so many trips and falls for me made me more than willing to wear then. I ‘ve even found some dress boots with no heel so I can dress up in the winter. With a longer skirt and the boots you really can’t see them. Am I vain or what!/! lol.

I called my doctor’s office yesterday as I was getting confused. I’ve been getting the flu shot per their instructions every year and haven’t had a problem as yet. The one year I didn’t I got the flu and badly. I’m a little worried about being lucky so far and wonder if I’m pushing my luck. I’m told the virus they give you is dead so it should be okay. The thought of getting as ill as I did that one year I skipped it doesn’t impress me but am concerned about getting the shot. Kinda like playing Russian Roulette.

Valerie,
If you haven’t done so already you should try med help, it can give you the name of each drug company and the info for getting help with all the different drugs. Before the part d insurance kicked in my meds were running about $2500 a month, I had 4 different drug companies sending me my meds for free. I still get help for one. It takes a bit of paper work and once I had to do one twice but once it started it was a God send. It also helps when sending in the application to do a cover letter explaining the disease and the other meds you are taking. Hope this helps.
I’m going through a bit of a blue period right now. Happens every fall when I realise I’m going to be stuck in doors soon. Plus going home to Nevada always makes me wish for my old life back. Sometimes it feels like I’ve been sick forever and everything is an up hill battle. Usually I’m upbeat but figure that once in a while I have a right to be cranky. It’s a hard road we’re on. Keep your chin up and lean on your friends here.
Pattie

Julie,
When I took my last serious tumble and had a plate put in my arm I had to stop some of the meds before surgery. No anti-imflamatories, no ‘roids. Be sure to discuss your meds with your doc as some take some time to get out of your system. I was doing solu-medrol at the time, they canceled my treatment and switched to the IVIg before the surgery and during the healing process.
Pattie

I’ve been using TOEoff AFOs for a year now, on both legs. They’re extremely light weight and have been a God send as I’m less likely to trip, fall and break something. Your Dr should be able to refer you to someone to be fitted. After using the old plastic fitted AFOs I was really happy to get the new ones, the old ones were so uncomfortable.

Julie,
After being so sick for so long don’t the little things mean so much? Glad to hear you’re doing better, hope things keep improving.

Sheila,
I, like you, get the aspetic menengitis from the infusions. I pretreat with Dexamethasone **4mg before each treatment and a couple of days after} along with the Benadryl and Tylenol. We also keep the rate around 80. It takes longer and I still get alittle bit of symptoms sometimes but nothing like it use to be. Hope this little bit of info helps. Good luck, Pattie

Dick,
When the pain goes beyond what I can handle I submerge myself in the hottest water I can stand in my old claw foot tub and soak. By the time the waters cooled I usually can climb into bed and sleep it off.
I think what you’re doing is great. Support systems are really important.