ShadNuke

I just wanted to say thanks! I know this disease all to well, and I'm glad to see another awesome person who hasn't given up! You're an inspiration to many!! I'm sure of that!! My eldest cousin's best friend had, I believe the same type of Muscular Dystrophy as you. I remember back in the 80s, when she was in her mid teens, hearing some of the stories that she had, about the disease. It had to be hard to hear that you may not live to see your next birthday, every single time you see the doctor. I remember her still walking and gaming to deal with casts all the time, and then it progressed to crutches, and so on until she ended up in a wheel chair. Man, could she dance! I remember many dances sitting in her lap as a teen! Haha! She was a strong woman, She battled hard! All the way to the end! She kicked Muscular Dystrophy in the ass for 33 years! I know back in the 80s and 90s there wasn't much in the way of treatment. It was a pain management thing mostly. And the medications only got stronger as the years went on. Has medical technology advanced enough to be able to treat MD, today?

WHO! not WHY!

I just wanted to say I feel for you. I suffer from rheumatoid arthritis, and I have tried a serious amount of medications, many of the same you are on, or have been on. I found the same issue with that damn Plaquenil, all I found it good for, was giving me heartburn up to my ears, and nothing seemed to quell the burning. I've been on the methotrexate, both pill form, and injection, and I was on a max dose of that, and it didn't help at all. Ive been on Enbrel, and Humira, and a mess of other pills before that to no avail. Now, I am on a pill called Lefleunomide, or Arava, along with another biologic called Actemra, which has just been approved in Canada for subcutaneous injection, and should finally be available this June! That's the killer when it comes to cost, which runs me $2200 every 3 weeks. That and the pills on top of that, would really suck if I didn't have a drug plan that covers the cost 100% for all my meds. I'm glad to see you are doing well on the methotrexate, and hopefully, it keeps it up. If you ever want to chat, let me know, because it's nice to have someone to talk to, who is in the same boat, when the need arises. Have a better day! :)

Other than blood work, there isn't much that can be done when it comes to diagnoses. There are a few different tests that need to be run. Rheumatoid factor, and an ANA profile needs to be run. They may also check for anti-CCP antibodies, and maybe do an erythrocyte sedimentation rate check, along with a C-reactive protein level.

When I was first diagnosed, I was just feeling run down, even after a good nights sleep. Honestly, it felt like I was recovering from a serious car wreck. Everything ached, and every joint was stiff. For me it was pretty bad in my hands and shoulders. My hands would be nearly seized up come morning time. It takes quite a bit of time to get going in the morning, even being on the meds that I am on. Every joint is stiff. I feel like I had done an extreme workout at the gym the night before, every morning. Once I finally get up and about, which usually takes 30-60 minutes, to totally get out of bed, and moving. Once I'm up and about, I'm still pretty sore, but it's a bit more manageable. If you've ever slept funny on your arm for a long time, and your joints arereal sore, because they haven't been moved in such a long time, that's pretty much what I deal with on a daily basis. It's kinda hard to explain, if you've never experienced that sort of pain before. MynRA kicked into overdrive after my 3rd back surgery. It was a dull ache before hand, and things were on the mild to moderate side, but once the second surgery was done, my pain had gone all the way to a loud roar. It's now moderately severe, edging more to the severe side. Pain and stiffness that doesn't go away, and nothing you do helps it, be it lying down, sitting, walking. It doesn't matter what you do, everything hurts all the time. During a flare, I am pretty much stuck in bed. I do venture out if need be, but everyone else pays for it, because my mood is stuck in total asshole mode. Which seems to be a lot of the time. Its frustrating when nothing you do seems to help much. So between everyone wanting me to go out and do things, and my body screaming at me to stop, and go, and lay down, and stand, and sit, and walk, all at the same time, doesn't help. Really, there are no tests that I am aware of, that can be done, other than the blood work. If you do have RA, you best get friendly with the needle, because it becomes a regular occurrence. I get blood drawn on a regular basis, I have had to do my own injections of meds, and I am now on an IV infusion every 3 weeks. You may be one of the lucky ones who can control things with portal medications, but the tests need to be done first. Hopefully that sheds a bit of light on things for you. Honestly, I'd like to say it gets better, but when it comes to chronic pain, so far, it hasn't gotten better for me, it's just been turned down a level or 2. It has never been under control for me.

Serious questions... What did your parents think of you doing said modelling? Was it something you hid from them or not? And the million dollar question... What did your grand parents think when they found out?