Starting on Sunday, I started to have new symptoms (numbness from bra to toes, both sides of the body-not just right side). By Monday morning I knew this was a relapse. As the morning went on, the numbness & tingling slowly moved up my body. I had called the new neurologist’s office to see what can be done. The old neuro still had not sent the records over (ugh!), so I was seeing if they’d be willing to see me with out those records. They told me that they would call me back. In a couple hours, they called me back and said they were able to get all the records!!!!! 😀 Woot! So they decided to see me on Tuesday (today). I was able to get my MRI records burnt to a disc so they can see the images.
Merry Christmas & Happy New Year!!! I hope everyone had a nice holiday week, my boys are still going crazy for all the loot they brought back. Lots of Beyblades, Kindle Fires, Disney Infinity, and other Kinect games for the Xbox, plus new Ninjago Lego sets! Lots of things to keep them occupied for the rest of break! 🙂 Here are a few pictures of the family.
Today, I had my mother in law come over after work and she taught me about how to do the injection. I was all set to do it in myself, but when it came down to it, I totally chickened out. Ugh!!! I hate needles. So after her telling me to set the needle on my skin and poke it in just a bit (drew a bead of blood), I really was over it. So I had her do it. She did it in the right front thigh. I popped a couple Advil and am now going to read a bit and watch Christmas Vacation (I love Christmas movies!!!). Have a safe New Year’s Eve. I will be watching a movie at home in bed. I have zero interest in going out. LOL.
Today I received my first shipment of Avonex! I am doing the titration, to help prevent the major side effect of flu like symptoms. I am blessed that my mother in law is a nurse, and was able to inject my first dose.
I took 2 Alieve to help prevent the flu like symptoms. And now I am laying in bed posting on my phone, ready to crash. I took a Tylenol PM too just in case. I am hoping that I don’t have the side effects, since we have a party to go tomorrow night. 😊 I will keep this updated as to how I react to the Avonex. I will have another post about the Neurologist later. If I don’t post before, Merry Christmas!
I have put a page up above that talks about the Walk MS and Bike MS fundraisers that I am registered for. My family and friends will be doing the 5k walk in April in Portland. And come August, I will be getting on 2 wheels and riding anywhere from 33-100 miles on my trusty bike. I highly doubt that I’ll be anywhere near 100, but it still looks cool in the paragraph! 😀 So take a look, donate some money and I’ll be super happy! https://droppinghalf.wordpress.com/walk-msbike-ms/
You thought I was talking about going for the basket and having my shot blocked, didn’t you? No, Okay, well I tried to shed a bit of humor into this post. I spoke to the insurance company twice today, the first time in the morning where my prior authorization was still open. They needed some clinical questions answered, I told them to send the FAX to the Dr. office and I’ll call them and give them a heads up. This was at 9:30 AM. At 1:40 PM, I got a call that they denied the PA, due to not getting the questions answered. Um, what? You gave my Neuro 4 hours to answer the questions? So I called the Dr. and spoke to his assistant, and she said she got the questionnaire in the afternoon (12:43 was the time stamp). So they essentially killed my PA within an hour of sending it. I called MedCo/Express Scrips to ask why it was denied. After bitching (I felt sorry for the chick on the phone, I was not pleasant, but I’ve been waiting since the end of October), she called my Neuro and got the questions answered, spoke to a pharmacist, and then came back on the phone line. After holding for 10-13 minutes, I was told it’s denied because I hadn’t tried an injection medication yet.
So now, we are going to appeal it, and get on the Avonex (1x week inter-muscular shot). From what I’ve seen on their site, they will give me a month’s supply right away while the insurance company figures out the rest. So I could be on meds soon! Thankfully they have someone who will come out and teach me how to inject myself. If not I am sure my mother in law would do it for me, since she’s a nurse.
That’s the update! Oh and with all this insurance frustrations, I went to the gym to burn off the pent up frustrations. Woo! Knee brace worked well!!!!
So I have been waiting and waiting to get the OK to go on the Multiple Sclerosis medicine called Gilenya. I have since learned that getting on any of the MS drugs takes a long time (2-4 weeks on average-me lots longer), and it’s a red tape nightmare. This is the sequence of events that has pissed me off (this time):
1. Submitted Gilenya form on 11/6 (2 weeks late)
2. Doc’s assistant forgot to get actual prescription signed by Dr. had to fax it back in. 11/10
3. Was denied by insurance, insurance asked for questionnaire (appeal) to be filled out and sent back on 11/26
4. Insurance officially denied the medication on 12/4 due to never receiving the questionnaire.
5. Said questionnaire was faxed on 12/4
6. Saw Dr. Egan and ripped him and his assistant a new one for this all slipping through the cracks. He apologized and admitted it was wrong. GOOD! 🙂
Today I met with my Neurologist, Dr. Egan, to go over my MS diagnosis. I was able to see my MRI images, which were kind of cool, in a sick and twisted sort of way. 🙂 So here are the pictures of the images that were on the screen, hence why they look bad. But you can see a bunch of white spots, nothing that was glowing, showing an active lesion. But I am in remission right now so that explains it.
This week’s weigh in was a great one, especially after last week’s Mexican sanfu! I lost 5.2 this week!!! I am very happy with that number and will try really hard to lose another 1-2 lb next week so I break even on the month, and not post a gain!
I’ve started to weight lift 3 times a week following a plan from a book I bought: The New Rules for Lifting for Women by Lou Schuler M.S.
This is an update that I was really hoping not to have to write. Here’s the general back story, you can click the posts to get more details:
In this post I wrote about how I was having numbness on my right lower leg and right hand, where it took 2 weeks for it to subside. I figured it was related to my knee injury and a tweak in my wrist from Hapkido. Then a few weeks ago I wrote this post about how it came back, but worse, including vision disturbances.
Last Wednesday I went to have a brain MRI to rule out the possibilities. That was a whole lot of claustrophobic fun! Not!!! It took about an hour, and thankfully my mother in law suggested the sleep mask to keep me from seeing how closed in it really is. It took a week to get the results.
This week I’ve been spending time at the doctor due to the right side of my body being numb (think pins and needles, or Novocaine effects). I had this happen around Labor day and it took about 2 weeks to go away which sucked. I am numb from top of my head to toe. What was worse was that I was seeing double on the left. Um, not okay! So my Doc ordered a MRI of my brain to rule out MS, Stroke, TIA, brain lesion, etc. We are really hoping it’s just a pinched nerve. I missed a couple of my anxiety meds, which can cause the double vision, so getting better about taking at the same time at night has helped that symptom! So Wednesday I’ll be having a brain MRI to check. But I am praying it’s just a nerve that’s really pissed off.