Herdaugther- I see that your mom was just diagnosed in Aug, I was diagnosed in Jul. It seem right after the shock of finding out. I started to develop new symptoms. Unable to sleep well and spasms seemed to start in more places within a month. I found that reducing the stress with...
Dave, you mentioned VA. I'm about to retire and will be on VA also. Presently, I'm using Option Care to access the port and medication is sent for home infusions that my wife does. Is this the same process you are doing, does a nurse come to your home and access your PICC every 7 days. And can...
Port Access: I've had my power port in place now for 3 months, the needle is changed out every 7 days for me. Believe they said in a hospital setting they sometimes leave in longer. I wouldn't recommend, since bathing by bath is a little trivial and the port seal gets wet. It's definatley a...
Yes, I find that eating prior to treatment and eating crackers during treatment works better for me. If not, my stomach gets upset. Also find that there is an increase of spasams for the first 4 days starting the treatment again then subsides. This is my 5th cycle of infusions since starting in...
Just completed my 34th treatment with Radicava...was seen by my Doctor, She said my ALS score hasn't changed. Notice that when I start the 10 day treatment, I get more entergy starting on the 4th day of infusion. Currently, on my 18 day rest period day 5 and noticed the last couple days more...
Question, just found out that once I apply for Social Security Disability that Medicare is automatic. Should I look into getting any supplement Medicare Group B. About to retire and unfamiliar with what Tricare, VA cover. Another concern is I’m on Radicava, and concerned I can keep using the...
We are doing at home infusions, using a port. Walgreens mails all supplies to our home. We have a nurse access the port and change it out every 7 days during treatment. We are brave enough yet to access the port. However, daily infusion treatments are easy to administer. Hopefully, this helps.
3 Oct 17: just completed initial 14 day treatment. Starting medicine free for 14 days. No serious adverse reactions noted, minor stomach upset when being administered, I found eating crackers while infusing helps. Did notice muscle spasms in areas I didnt previous have, but are minor. Also, feel...
Just dropping you a note:
Started Radicava on the 19th.
Day 1-minor headache, increased spasms Day 2-no headache, spasms Day3- No headache, no increase spasms, feel stronger. Grip Test on 21 Sept 17-at PT 123rt; 122left; Pinch Test 28rt/26lft. Previous Grip Test 12 Sep 17:123rt;126lft; Pinch...