I thought you guys should know
Okey dokey. I have not really updated lately even though I have had a lot going on and a lot to say. Let me just catch everybody up on the past three weeks.
Three weeks ago I decided to go to an ear nose and throat doctor to see if there was anything that can be done about my motion sickness. For anyone who does not know I get INSANELY motion sick. I mean it is so bad that if I turn my head too fast I feel like I am going to throw up. Anywho I have been living with this my whole life. But for some reason I felt like it was getting worse. For example when I was sixteen I flew on an airplane and didn't feel the slightest bit sick. Last year I flew on an airplane and felt a little queasy but not too bad. This year I flew on an airplane and almost threw up when we landed the first time and then actually did throw up the second time. So plane riding has most certainly gotten worse. I don't think I am any more motion sick in cars than I used to be, but then again there isn't really anywhere to go from where I already am in that department. Hell every time I even get into a car I feel like I am going to throw up. SOOOOOO nevin wants to (and probably has to for work) fly to Hong Kong. Now after my last escapade with barf bags and such I am not really keen to get back on a plane especially for that long of a flight. So nevin encouraged me to seek help. I mean I wanted to also. I had actually gone to a general practitioner about it last year and they told me “tough”. Literally they were like oh well, tough, deal with it. SOOOOO I decided to make an appointment with a doctor who actually knew something about the inner ear and balance and shit like that. Well I go in and the guy asks me some questions and based on my answers and some little pokey tests he thinks I might have a hypersensitive ashdakssdhadhg. I have no idea what the word is after hypersensitive. I think it was vestisomething. Anywho he said that means that whenever I see something in my peripheral vision moving it makes me nauseous. For example I never knew why I got nauseous in grocery stores. He said that it was because I could see the aisles moving in my peripheral vision as I walked and that made me nauseous. Now he was pretty sure that it was I have, but he wanted to rule out some other things first. Oh by the way the treatment for hypersensitive thingy is to have me do physical therapy. Apparently they are going to make me do all these exercises that make me nauseous to help desensitize my hyperwhatever.
Two weeks ago. I come in for some tests. They shove some things in my ears which hurt my eardrum. That was to measure the something of my ear drum. Then they tested my vision and my hearing. Then they put electrodes all over my head and made me follow all kinds of lights with my eyes, but not move my head. Then they made me sit up and lay down very quickly. Then the woman would have me lay back quickly and she would yank my head to the side and shank my head. It didn’t hurt at all but it was annoying. Then for the fun part of the test. They had to induce vertigo 4 different times. I have never experienced vertigo before. But it felt like the whole room was spinning and that I was going to fall off the table. I also of course got very very nauseous. How does one induce vertigo one might ask. Oh well you take a hose and shove it in the left ear and it blows extremely cold air straight into your ear very forcefully. It hurts. This sends mixed messages to the brain. The brain gets confused and vertigo happens. After the room stops spinning repeat process in right ear. Then back to the left ear for hot air being blown forcefully into the ear. Oh and if you haven’t caught on by now air being pumped into ear = the loudest thing I have ever heard in my life. SOOOOO that marked the end of that test. My ears have not felt right since. So I waited for freaking ever for the doctor to come and talk to me. Oh yeah I forgot I probably spent more time in the waiting room than in the actual test and consult. I mean we are talking about hours in the waiting room. So the doctor finally comes in and he tells me everything is as he expected. I have good…. Stuff. I can’t remember what he said I had that was good, but it was good. But they discovered I have a slight nystagmus in both eyes. Now if you don’t know what that is, that is when your eyes move involuntarily. My eyes apparently tick slightly to the left all the time. Nice. So I was kinda freaked out about that a little bit. I was like what in my brain is happening to all of the sudden make my eyes to do that. I mean I have had tons of eye exams before and nobody has ever said I have that. So that must be new. Which creeped me out. The doctor said that just to be responsible he wanted me to go to a neurologist to get a neuro consult. Now he recommended his colleagues across the hall (flash forward, big mistake). He says that when they clear me we can start the PT.
A week and a half ago- I got to see a dr. named Dr. Hussein. Which if I was him I would not be living in the US with a last name of Hussein, but ok. So he starts to question me. Now this guy looks kinda young. Nevin kept whispering that he looked like an uptight gay guy. Anywho he was questioning me and it kinda felt like he was asking me leading questions. He wasn’t very patient and I didn’t like his attitude. Then…..then here is where he turned my world upside- down. He said I am very worried that you might have MS….. and for those of you who don’t know what MS is. Here let me give you a brief description:
“Multiple Sclerosis (MS) is an inflammatory disease of the Central Nervous System (CNS) - that's the brain and spinal cord. Predominantly, it is a disease of the "white matter" tissue. The white matter is made up of nerve fibers which are responsible for transmitting communication signals both internally within the CNS and between the CNS and the nerves supplying rest of the body.
In general, people with MS can experience partial or complete loss of any function that is controlled by, or passes through, the brain or spinal cord.”
Now he drops this bomb on me out of no where. He said he was very worried that I might have this horrible thing. Then without barely a second’s break he says that after he runs some tests we might have to do a spinal tap….
We left his office. I was trying not to freak out. I didn’t say anything to nevin until we got home. I didn’t even mention it until that night. I didn’t know what to say. But before I could say anything he turned to me and said I know that you don’t have MS, but if you do I promise to always stay with you and always care for you. Which is really really sweet. So for all he knew, my brain could be being overcome with lesions and I could be dead in a number of years. MS is a horrible disease. I could be paralyzed. I could loose the ability to talk, I could go blind. Anything and everything that has to do with the brain (which is everything) could be damaged. I cried a lot of the past week and a half. I didn’t tell anybody but nevin. I didn’t know what to say. I didn’t want it to be true. I thought that maybe by saying it before my tests that it would jinx me. I didn’t even tell my mother. I didn’t think she could handle it.
I was scheduled for an MRI and 5 other tests. He also told me to bring a copy of my old MRI scans. I had an MRI done when I was 15. He asked if it was normal. I said yes. He said that he wanted to check it to make sure he couldn’t see any lesions. So basically this guy was convinced I had MS and was trying to prepare me for the worst, although he did a really shitty job. Nevin and I both said he was a dumb ass. I mean how could I have MS? I mean I don’t. DO I? That’s all I could think of. I kept telling myself I did not have this, but in the back of my head I couldn’t shut off my doubt. I mean where did that nystagmus come from? That’s not normal. And MS can effect the eyes, so I kept thinking that I might have MS because I of that. Then the dr’s “extremely worried”ness scared me too.
Friday - I have the MRI done. It hurt. The woman had to put a needle into my arm to inject contrast into my veins. Of course my veins rolled in my right arm. Apparently she missed so bad that my vein “bubbled up”. It was really really starting to hurt. I mean it hurt before, but we are talking about I was almost gasping in pain. So then woopdy doo we get to try it in the other arm. She managed to get it in that arm. The rest of the test went fine. My arm however was puffy, red, black, and purple. GOOOOD job lady. So both my arms were bandaged, which is always fun. It was hard explaining to my mom why I needed so many tests. I just told her that they wanted to make sure I didn’t have any underlying problems other than the hypersensitivity.
Now with my first and only appointment with dr Hussein he told me to get my old MRI scans, which I did. Now the MRI had to be done some where else, but they could do the rest of the tests there in the office. So he told me that if I get my MRI done before the rest of the tests that I could just bring everything in the day of my tests and after the tests were done we could do my follow up visit right then and there at the office. So I busted my ass to make sure I had everything together. I made a special trip to see mom to get my old scan. And I made sure I made my MRI appointment before my other tests.
Today - Now All day today I kept telling myself that I don’t have MS. I also kept telling myself that after today I would have the results that proved I did not have MS and I could stop worrying about it. I go in with all my stuff. 2 sets of MRI scans are huge. The tests lasted from 11:30 to 3:15. Poor nevin sat in the waiting room with his computer. As I checked in I told the receptionist that Dr Hussein had said he would do the follow up with my after the tests were done. She said ok and then picked up the phone and said she was calling his personal secretary to remind him. Great. Wonderful. That was really nice of her to make sure that he remembered about my consult. Because that would really suck if he forgot. Right?
Oh and I had another burst of panic. I had copies of the MRI I that I just had done. And written on the back of them was… MS Flair. I felt so scared. What did that mean? Did that mean I had MS and they could see it on the scan? Did it mean that it was flaired up? I didn’t know.
First test. Evoked response. I have electrodes on my head and face. I have ear plugs in my ears. There is a half an hour of clicking and whooshing noises played into my ear. A little annoying but pain free.
Second test. EEG. Electrodes all over my head and on my chest. I lay back in the dark. They put a special lamp 2 inches away from my face. I close my eyes followed by twenty minutes of flashing lights. Oh by the by I have probably had about 5 MRI scans (all of the brain) in my life. I have also probably had about 5 EEGs in my life. So the MRI and EEG were old hat for me, but still annoying. Anywho after 20 minutes of that I have to breathe heavy for 2 minutes, which of course made me really really light headed and I actually felt like I was going to have an asthma attack (I have mild asthma). Second test done. Removing all the goop from my hair = EW.
Third test. I don’t remember what this one was called by I laid back on a table and this lady did an ultra sound of my neck.
Fourth test. Oh by the way before I could get to my fourth test I had to wait like 20 minutes on a table in the dark for this woman to get out of my way. I was the first one back in the room. She came in after me. But apparently she needed to go first. So there I am getting ready to do my last test of the day and get told I don’t have MS and I have to wait on this woman who clearly butted in front of me in the testing line up. GRR GRR GRR. Not today lady. But oh well. She was old and I guess they figured the less time she had to be on the table the better. Which I understand, but still. Anyway the 4th test they ultra sound behind and in front of my ears, my neck, and my throat. Then for the creepy part. They put the ultra sound wand on my eye lids and did an ultrasound of my eyes.
So that’s it all done. I was supposed to go see Dr. Hussein now and get told I don’t have MS. Right? WRONG! As it turns out dr. Hussein had left already…. I was crushed. He told me he would be there. Someone called him this morning and reminded him to be there. I was standing there with all my hopes riding on him being there. I’m standing there with scans of my brain (that could possibly say that I have MS) that he told me to bring, and he just….leaves. I couldn’t believe it. I made it all the way to the car before I broke down. I cried and cried. I couldn’t believe he lied to me. Today was the day he was supposed to tell me I don’t have MS. I couldn’t stand it. I couldn’t stand not knowing. I had gathered all my reserve together because I knew this was the day. And then it just wasn’t. I was crushed. Nevin, seeing how upset I was got out of the car, grabbed my MRI scans and walked away. I didn’t know where he was going, but I doubted that he was going to punch anybody. At least I hoped he wasn’t going to punch anybody. About five minutes later he comes back without the scans. He said that he gave them the look and explained to them just how wrong they were to do that to me. They tried to brush him off, but he wanted to know who he could complain to about the DR. They again tried to give him the run around, but then he told him that his fiancée was in the car crying because of what they did and that they had better fix it. I thanked him. That was very sweet of him.
So still very upset and now with a huge headache from crying we have to go grocery shopping. Less than an hour after we left the office I get a phone call. Apparently they had called Dr. Hussein back in and he looked at my scans. Wait for it……. Wait for it…… no no I waited in agony for two weeks you can wait two lines ………… ……………………… The secretary that called me back said that he said that according to the scans it looks like I don’t have MS. WOOOT!!!!!!!!!!!!!!!! I mean really WOOOOOOOOOT! Now I know that it wasn’t the doctor on the phone. And I also know that they said it looked like from the scans that I don’t have MS, not you defiantly do not have MS. Which would have been very very very very very nice to hear. But hey, the MRI scans were the ones I was worried about!! And according to them I don’t have MS. I’m still a smidgeon worried about the other tests, but I’m going to go with the fact that the man looked at pictures of me brain and saw that I do not have MS! WOOT.
So nevin went in to do some grocery shopping. Flash forward to after dinner. Nevin surprises me with a cake. Written on top are the letters HCYDHMSD. I asked him what the letters stood for. HE said happy congratulations you don’t have MS day. LOL. He has been really supportive throughout this whole ordeal. I don’t think I could have done it without him. I especially don’t think I could have handled today. I don’t know what I would have done with out him. Possibly just went home and cried until I was sick then not gotten out of bed.
But nevin was here and he saved the day!!!
Sorry for the long post, but I have been holding all that in for 2 weeks. Which is not a long time, but when you think there is a possibility of you dying young for 2 weeks you tend to reach your limit very quickly.
Thank you nevin!!! I love you!!
P.S. I DON’T HAVE MS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WOOT!!!!!!!!!!! LALALALALALLALALALLALALAL!!!!!! WOOOOT!!!!! WOOOOOT!!!!!! WOOOOOT!!!!!!!!
P.p.s WOOOOoooooooooOOOOOOT!!!! *Sigh*