The Thing About Birthdays...
The thing about birthdays, at least mine have been the past few years, is that they have been kinda crappy. I know I know. My birthday is in february, why am I bringing it up now. I'm about to tell you a story that started around my birthday of this year...
Around february I noticed some tingles in my toes but didn't think anything of it figuring it was a pinched nerve or something. It happens at times, it goes away, no big deal. Then one night I was on my feet in the kitchen for 8+ hours cleaning and cooking while listening to "Pride And Prejudice and Zombies" (which by the way, is totally awesome to listen to and made the cleaning kinda fun). The next day my whole leg felt tingly and hurt. Again, I didn't think anything of it because I had been on my feet a long time and happily blamed it on cleaning. Hey any excuse not to do that is great, just the results of not cleaning isn't so great. Must become rich and hire a maid. The only thing is that the pain got worse and within a week I couldn't even sleep my leg hurt too much. Me sleep deprived and in pain is not a pretty thing. Even I feel bad for DD about that time. We went to the doctor (DD always goes to all my appointments with me) and she didn't know what was wrong but she perscribed me steroids, referred me to a neurologist, and made me an appointment for a MRI. The steroids worked (yay! and only cost me $4 another yay!) and the MRI came back clear (woot! but was expensive ack!) but I couldn't get into the neurologist for a month (damn).
I finally get to the neurologist and by this time my leg is still tingly but now I am having trouble seeing out of my left eye and when I look down I get these painful tingles up and down my lower body (that hasn't gone away yet damnit). He does a full exam then lists off about a dozen things that could be wrong. Time for more tests and an eye doc appointment.
The eye dude does some tests (man was he grumpy, didn't even acknowledge DD who was there with me. We found out later that he's retiring in July and figure he just didn't care anymore) and dialates my eyes (first time that ever happened to me, talk about strange) and has me do another test. So this test is where I first I covered my left eye, looked at some lights, and click the little button every time it lights up. I do fine looking out of my right eye. I then cover up my right eye, stare at the four little lights.
Lady Doing Test: Look at the lights. Click that button every time you see a light flash between them. Starting test now.
Me: *waiting waiting waiting*
Lady Doing Test: Test ending now.
Me:.... uh oh.
Another round of this test had shown that I had a big dark spot in my vision in my left eye where I couldn't see at all. The Grumpy!Doc tells me I have a swollen optic nerve. It will go away on it's own (and does about a week after this appointment) but wants me back in in a month when it's gone to see if there is any damage. Already went back and yay no long lasting damage.
I got two more MRIs, one of my back (worried about a slipped disk) and of my head (lots of things heh). My back comes back clear and since I gave him the copy of what I got of all the scans and such (he just gets a couple of pictures and a report), he was able to see my neck and notice that there weren't any slipped disks up there either. The only thing was that on the brain scan he noticed some white spots (uh oh). Again, he mentions a couple of things that could be wrong with me, but says it's either a slipped disk or Multiple sclerosis. I was rooting for the slipped disk (as scary as that sounds but at least it isn't a life long disease). But since the slipped disk was ruled out he decided to drop another bomb on me. It was with Multiple Sclerosis or lymphoma. At that point I was rooting for MS. Talk about putting things in perspective. Of course he tells me this over the phone just before I get out of the car for a work meeting. (More about the fail job in another post.)
Another order for more blood work and another brain scan, with contrast this time, and an order for a spinal tap.
My blood works comes back clear and eliminates almost everything (like a B12 deficiency, lupus, sclaradurma, and other things). The brain scan with contrast comes back (more white spots) and is a step closer to confirming Multiple Sclerosis.
The spinal tap SUCKED MAJORLY. First, the Dr. B said that he could do it in his office. He's done it hundreds and hundreds of times without any problem but if he doesn't get it on the first poke he will send me to the hospital to have it done, which was my other option. The big advantage to getting it done at the hospital is that they use an xray machine to take a picture of the spine so that they can get it between the bones on the first poke. I'm a wuss so I decided to go for the hospital route. I get there, check in (they have DD wait in the waiting room), they draw some blood to compare with my spinal tap results in case any blood gets into the sample, I lay in one of those ever so festive gowns for about thirty minutes then I'm wheeled away to the room to get the spinal tap done (it is really strange to be wheel away while laying down, it's like a funky dream where you float... or it could be just me). Now everything I've read said that you keep relaxed and this won't hurt. You'll feel the pressure of the needle going in and such, but no pain (yay numbing drugs!). The nurse even tells me that and that the doc who is going to do it is very good. So this are looking good. I lay on my stomach, they take a pic of my back, she cleans me up, the doc comes in, studies said pics, and injects me with the stuff to numb me up. It stung but I expected that. Everything is still going good. Then he goes to poke me. Something isn't right. It hurts A LOT. I am trying my best to relax but it hurts. The nurse and doc don't know why. I'm starting to cry at this point (ahhh you big baby!!!) when I notice that the nurse is moving the machine she took the xray with around. She tells me that she's moving it to take a side picture. Turns out, the needle isn't long enough and that's part of why it hurts so much. The numbing stuff didn't go down all the way. Cry cry cry. I hate needles. Why me? He pulls the needle out, numbs me up some more, AND STICKS ME AGAIN. Of course the damn stuff really takes affect when he's about all done. The nurse felt really bad though. She kept rubbing my leg or arm in comfort and apoligising to me about it hurting when she said it wouldn't. They take the fluid, and wheel me back to where I was before (I kept wanting to get out of bed to help open doors, I really wasn't liking the whole being dependent on someone else like that). As soon as she gets me back she tells another nurse to get DD for me right away that I had a hard time with the spinal tap (that made me very happy, I really wanted her right there at that moment). Poor DD. She had been in the waiting room the whole time. It took about 3 hours. After the first hour she had gone up to the desk and asked if I was done. They had told her I was just getting into xray and that things were a little backed up. When the nurse was walking away from me to go get DD she had said she'll see if DD was still around. I giggled. And sure enough just as I thought, DD had been hanging around the door waiting for someone to go get her. Made me go awwww. I was so happy to see her. If all that wasn't crappy enough, it takes me almost 5 days of doing nothing but laying on my back in bed before I am able to be upright without it feeling like someone was taking a sledge hammer to my head. You see, you can get headaches after a spinal tap. It's from a the spinal fluid getting into your system. DD and I guess that since he had to poke me twice that that is why it took me so long to get mobile again.
So we go to my appointment with Dr. B to get the finale test results and yup, I have Multiple Sclerosis. Well... crap. At least it's not lymphoma. (There's a protein that 90% of people with Multiple Sclerosis have that shows up in the spinal tap test, I have it and it eliminated cancers and infections in my spine, which sounds really scary.)
While this royally sucks, I do have a couple of things going for me. One, the doc was surprised and pleased that the oral steroids worked for me (normally they shouldn't) so this might not have a bad flair up. Second, he only found a few dots on both of my scans so it looks like we caught this early. Third, I'm young and there have been strides in treatments for this disease. The only thing he's worried about is that I went from having one leg hurting, to both, and while they got better I did have an eye problem (a common thing for people with Multiple Sclerosis) and now I'm having a hell of a time with my left hand (it's only recently, as in days, that I've been able to type without pain.) He's worried about the number of attacks so close together. I just have to watch out for any weakness (which is bad) or if my eye problem comes back (could lead to blindness).
This also explains why I always felt like crap during the summer. People with Multiple Sclerosis tend to get tingle and hurt, and when they have flair ups it's usually during the summer. I've felt kinda crappy in hot weather but just thought it was because I'm wimpy. It also explains why I really didn't start feeling really bad during the summers until I got to Georgia. It's a whole lot more hotter here than in the SF Bay Area.
I'm in good spirits about all this and pretty darn positive about it all and I'm glad to know what was wrong, it was the not knowing that sucked. (Except the spinal tap. That was tramatizing. I NEVER want to do that again.)
DD and I saw the Dr. B recently about treatment options. We looked at Rebif, Avonex, and Betaseron which are all interferons. The biggest problem with interferons is that it requires constant blood tests to check my white blood cells and can cause other serious problems. I know someone who had an interferon treatment for a different disease and her white blood cells count bottomed out (if you have a fever over the weekend of any kind, immediately go to the ER...eeep!) and lost a lot of weight, not to mention the fact she'd sleep a lot cause of it. She ended up having to have what amounted to was baby white blood cells injected every week. Now I'm going to be on this for the rest of my life. I didn't want that. So we are going to go with a fourth option. Copaxone is what we are going to go with. I don't need the constant blood tests with this, it's been around for fifteen years, and it comes with a self injector where I don't see the needle (THANK GOD, I hate needles!) The only thing is that I need to take this every day unlike the others that are two or three times a week. But I don't want to go to an interferon if I don't need to. Now for the really crappy part. I'm uninsured. I can't get on DD's health plan cause one of us isn't a dude and able to marry (really really unfair.) So what does that mean? That without any help it will cost $3,600 for ONE month of this stuff. Luckily I have this little card that helps with those uninsured and doing to the docs in this certain building. We paid $90 for a year for this card with extended pharmacy (mostly for blood tests, one set of tests last year was going to be around $500 and it brought it down to around $130). So with this thing it will bring down the cost to %2,000 a month. Still a hell of a lot. But if I can get job (yeah, the other one didn't go to well... again, more about that in another post) that will get me at least $2k a month then it we will be okay. I am applying for help from NORD (National Organization for Rare Disorders) but there's no guaranty I will be accepted. So please keep your fingers crossed for me.
So that's where we are now. I'm applying for NORD so I can get my meds and start feeling better and just generally learning about MS.
I figure though on my next birthday I'm going to get some fatal disease like ebola or the plague.
Around february I noticed some tingles in my toes but didn't think anything of it figuring it was a pinched nerve or something. It happens at times, it goes away, no big deal. Then one night I was on my feet in the kitchen for 8+ hours cleaning and cooking while listening to "Pride And Prejudice and Zombies" (which by the way, is totally awesome to listen to and made the cleaning kinda fun). The next day my whole leg felt tingly and hurt. Again, I didn't think anything of it because I had been on my feet a long time and happily blamed it on cleaning. Hey any excuse not to do that is great, just the results of not cleaning isn't so great. Must become rich and hire a maid. The only thing is that the pain got worse and within a week I couldn't even sleep my leg hurt too much. Me sleep deprived and in pain is not a pretty thing. Even I feel bad for DD about that time. We went to the doctor (DD always goes to all my appointments with me) and she didn't know what was wrong but she perscribed me steroids, referred me to a neurologist, and made me an appointment for a MRI. The steroids worked (yay! and only cost me $4 another yay!) and the MRI came back clear (woot! but was expensive ack!) but I couldn't get into the neurologist for a month (damn).
I finally get to the neurologist and by this time my leg is still tingly but now I am having trouble seeing out of my left eye and when I look down I get these painful tingles up and down my lower body (that hasn't gone away yet damnit). He does a full exam then lists off about a dozen things that could be wrong. Time for more tests and an eye doc appointment.
The eye dude does some tests (man was he grumpy, didn't even acknowledge DD who was there with me. We found out later that he's retiring in July and figure he just didn't care anymore) and dialates my eyes (first time that ever happened to me, talk about strange) and has me do another test. So this test is where I first I covered my left eye, looked at some lights, and click the little button every time it lights up. I do fine looking out of my right eye. I then cover up my right eye, stare at the four little lights.
Lady Doing Test: Look at the lights. Click that button every time you see a light flash between them. Starting test now.
Me: *waiting waiting waiting*
Lady Doing Test: Test ending now.
Me:.... uh oh.
Another round of this test had shown that I had a big dark spot in my vision in my left eye where I couldn't see at all. The Grumpy!Doc tells me I have a swollen optic nerve. It will go away on it's own (and does about a week after this appointment) but wants me back in in a month when it's gone to see if there is any damage. Already went back and yay no long lasting damage.
I got two more MRIs, one of my back (worried about a slipped disk) and of my head (lots of things heh). My back comes back clear and since I gave him the copy of what I got of all the scans and such (he just gets a couple of pictures and a report), he was able to see my neck and notice that there weren't any slipped disks up there either. The only thing was that on the brain scan he noticed some white spots (uh oh). Again, he mentions a couple of things that could be wrong with me, but says it's either a slipped disk or Multiple sclerosis. I was rooting for the slipped disk (as scary as that sounds but at least it isn't a life long disease). But since the slipped disk was ruled out he decided to drop another bomb on me. It was with Multiple Sclerosis or lymphoma. At that point I was rooting for MS. Talk about putting things in perspective. Of course he tells me this over the phone just before I get out of the car for a work meeting. (More about the fail job in another post.)
Another order for more blood work and another brain scan, with contrast this time, and an order for a spinal tap.
My blood works comes back clear and eliminates almost everything (like a B12 deficiency, lupus, sclaradurma, and other things). The brain scan with contrast comes back (more white spots) and is a step closer to confirming Multiple Sclerosis.
The spinal tap SUCKED MAJORLY. First, the Dr. B said that he could do it in his office. He's done it hundreds and hundreds of times without any problem but if he doesn't get it on the first poke he will send me to the hospital to have it done, which was my other option. The big advantage to getting it done at the hospital is that they use an xray machine to take a picture of the spine so that they can get it between the bones on the first poke. I'm a wuss so I decided to go for the hospital route. I get there, check in (they have DD wait in the waiting room), they draw some blood to compare with my spinal tap results in case any blood gets into the sample, I lay in one of those ever so festive gowns for about thirty minutes then I'm wheeled away to the room to get the spinal tap done (it is really strange to be wheel away while laying down, it's like a funky dream where you float... or it could be just me). Now everything I've read said that you keep relaxed and this won't hurt. You'll feel the pressure of the needle going in and such, but no pain (yay numbing drugs!). The nurse even tells me that and that the doc who is going to do it is very good. So this are looking good. I lay on my stomach, they take a pic of my back, she cleans me up, the doc comes in, studies said pics, and injects me with the stuff to numb me up. It stung but I expected that. Everything is still going good. Then he goes to poke me. Something isn't right. It hurts A LOT. I am trying my best to relax but it hurts. The nurse and doc don't know why. I'm starting to cry at this point (ahhh you big baby!!!) when I notice that the nurse is moving the machine she took the xray with around. She tells me that she's moving it to take a side picture. Turns out, the needle isn't long enough and that's part of why it hurts so much. The numbing stuff didn't go down all the way. Cry cry cry. I hate needles. Why me? He pulls the needle out, numbs me up some more, AND STICKS ME AGAIN. Of course the damn stuff really takes affect when he's about all done. The nurse felt really bad though. She kept rubbing my leg or arm in comfort and apoligising to me about it hurting when she said it wouldn't. They take the fluid, and wheel me back to where I was before (I kept wanting to get out of bed to help open doors, I really wasn't liking the whole being dependent on someone else like that). As soon as she gets me back she tells another nurse to get DD for me right away that I had a hard time with the spinal tap (that made me very happy, I really wanted her right there at that moment). Poor DD. She had been in the waiting room the whole time. It took about 3 hours. After the first hour she had gone up to the desk and asked if I was done. They had told her I was just getting into xray and that things were a little backed up. When the nurse was walking away from me to go get DD she had said she'll see if DD was still around. I giggled. And sure enough just as I thought, DD had been hanging around the door waiting for someone to go get her. Made me go awwww. I was so happy to see her. If all that wasn't crappy enough, it takes me almost 5 days of doing nothing but laying on my back in bed before I am able to be upright without it feeling like someone was taking a sledge hammer to my head. You see, you can get headaches after a spinal tap. It's from a the spinal fluid getting into your system. DD and I guess that since he had to poke me twice that that is why it took me so long to get mobile again.
So we go to my appointment with Dr. B to get the finale test results and yup, I have Multiple Sclerosis. Well... crap. At least it's not lymphoma. (There's a protein that 90% of people with Multiple Sclerosis have that shows up in the spinal tap test, I have it and it eliminated cancers and infections in my spine, which sounds really scary.)
While this royally sucks, I do have a couple of things going for me. One, the doc was surprised and pleased that the oral steroids worked for me (normally they shouldn't) so this might not have a bad flair up. Second, he only found a few dots on both of my scans so it looks like we caught this early. Third, I'm young and there have been strides in treatments for this disease. The only thing he's worried about is that I went from having one leg hurting, to both, and while they got better I did have an eye problem (a common thing for people with Multiple Sclerosis) and now I'm having a hell of a time with my left hand (it's only recently, as in days, that I've been able to type without pain.) He's worried about the number of attacks so close together. I just have to watch out for any weakness (which is bad) or if my eye problem comes back (could lead to blindness).
This also explains why I always felt like crap during the summer. People with Multiple Sclerosis tend to get tingle and hurt, and when they have flair ups it's usually during the summer. I've felt kinda crappy in hot weather but just thought it was because I'm wimpy. It also explains why I really didn't start feeling really bad during the summers until I got to Georgia. It's a whole lot more hotter here than in the SF Bay Area.
I'm in good spirits about all this and pretty darn positive about it all and I'm glad to know what was wrong, it was the not knowing that sucked. (Except the spinal tap. That was tramatizing. I NEVER want to do that again.)
DD and I saw the Dr. B recently about treatment options. We looked at Rebif, Avonex, and Betaseron which are all interferons. The biggest problem with interferons is that it requires constant blood tests to check my white blood cells and can cause other serious problems. I know someone who had an interferon treatment for a different disease and her white blood cells count bottomed out (if you have a fever over the weekend of any kind, immediately go to the ER...eeep!) and lost a lot of weight, not to mention the fact she'd sleep a lot cause of it. She ended up having to have what amounted to was baby white blood cells injected every week. Now I'm going to be on this for the rest of my life. I didn't want that. So we are going to go with a fourth option. Copaxone is what we are going to go with. I don't need the constant blood tests with this, it's been around for fifteen years, and it comes with a self injector where I don't see the needle (THANK GOD, I hate needles!) The only thing is that I need to take this every day unlike the others that are two or three times a week. But I don't want to go to an interferon if I don't need to. Now for the really crappy part. I'm uninsured. I can't get on DD's health plan cause one of us isn't a dude and able to marry (really really unfair.) So what does that mean? That without any help it will cost $3,600 for ONE month of this stuff. Luckily I have this little card that helps with those uninsured and doing to the docs in this certain building. We paid $90 for a year for this card with extended pharmacy (mostly for blood tests, one set of tests last year was going to be around $500 and it brought it down to around $130). So with this thing it will bring down the cost to %2,000 a month. Still a hell of a lot. But if I can get job (yeah, the other one didn't go to well... again, more about that in another post) that will get me at least $2k a month then it we will be okay. I am applying for help from NORD (National Organization for Rare Disorders) but there's no guaranty I will be accepted. So please keep your fingers crossed for me.
So that's where we are now. I'm applying for NORD so I can get my meds and start feeling better and just generally learning about MS.
I figure though on my next birthday I'm going to get some fatal disease like ebola or the plague.