Wednesday, July 19, 2017

The results

A couple of months ago I shared that I was going through a lot of medical testing. I've been through the ringer over the years, but I finally found a doctor that decided that the 17 brain lesions I have aren't normal (duh) and wanted to do a bunch of tests I've never had. I've been looking for answers for years. A lot of years. I initially started having back problems when I was 16. That was 11 years ago. I've gotta say, worsening chronic pain for a decade doesn't make for a very happy Alexa. So, we were hoping for answers. 

I was given options. It could be TIAs (which are small strokes that I had before my heart surgery), seizures, and Multiple Sclerosis. The last being the most mentioned candidate for the last 7 years. Doctors mentioned it but never tested for it because I was "too young." So, I had blood work. Blood work that showed a low level of antibodies for lupus, and a slightly low vitamin B12. No biggy. I don't have symptoms of lupus and the B12 deficiency wasn't low enough to cause all of my neurological issues. Moving on.
Evoked Potentials...I look crazy.

I had evoked potentials testing and a 72 hour ambulatory EEG. The EEG was unpleasant. I had 25 wires attached to stickers on my head under a bandage for 3 days. I wasn't allowed to shower. And the one time I went out I realized people thought I might be dying based on how I was treated by strangers. I had some abnormal readings from that test, but no seizures. So, that's good! I was super nervous that was going to be an issue. The evoked potentials didn't come with good news. In fact, my body totally failed me there. Evoked potentials test how your brain responds to different stimuli. It's actually the most relaxing of all the medical testing I've had done. They put all the same stickers and wires on your head, which is the worst part, for me anyway. I'm told that most people don't enjoy the electrocution part, but we will get to that. 

First up was just a regular EEG. I got to sleep for 20 minutes, which was lovely. It was for a base reading of my brain. The first test we did was the auditory, which is just listening to some clicks. The sensory test is where they electrocute you. Yay! I actually didn't feel it. Maybe a slight buzz when she had it really high. Apparently my nerves in my legs are not so great. For the visual test you just sit really close to a TV screen that has an annoying graphic on it. All of these tests came back abnormal. The auditory showed problems with my left ear, so apparently there's damage to the left side of my brain stem. I also didn't do well with the visual. What's interesting is I didn't know there were problems with my eyes and ears. Looking back now it's obvious. My vision has been gradually getting worse over the last 5 years, and I always thought the ringing in my ears that I've had since I was like 18 was normal. Apparently it's not? Who knew!

Right before my lumbar puncture
These tests were ultimately inconclusive. Well, not exactly. But since I had the ANA (antibodies) for lupus, the low vitamin B12, and the messed up brain, both through MRI (17 lesions) and evoked potentials, I had to get a spinal tap to rule things out. The spinal tap was a nightmare. Actually, it wasn't so bad. The build up in my head to the spinal tap was the real nightmare. The doctor was actually really good. I had it done under flouroscope in the hospital so there was no guesswork involved on where the needle should go. The worst part, as with an epidural, is the numbing. Oh, the burn. But after I was all numbed up I felt nothing. I didn't even feel the weird pressure I feel with epidurals because they were doing it under x-ray which meant they didn't have to move anything around once they got in there. Unfortunately I screwed up after and didn't lay down flat long enough to allow it to heal. I ended up with a spinal headache from my the fluid leaking. That was no fun. Nothing compared to my worst migraines, but it was constant for a week and made bending, like to pick up my baby, a nightmare. And of course Gabe was out of town which meant that friends had to help me a ton because the only way I got relief was laying flat. I had to have a blood patch to get it fixed a week after the fact. That was a fiasco in and of itself. The doctor was a jerk. He told me I didn't have a spinal headache, that the blood patch probably wouldn't work, and that I most certainly don't have MS. Well, he was wrong. The blood patch worked within minutes because it was a spinal headache. Another doctor that wasn't a bully did the blood patch and contacted me after. The jerk doctor didn't speak to me again after the blood patch was finished and it worked.

Anyway! That was a long winded way of saying that my lumbar puncture came back negative. ALL OF THAT FOR NOTHING. 3 needles in my spine, that gradually got larger and larger, for absolutely nothing. Well, not exactly. It did rule out lupus, which is good. Right now we are just saying that I have an autoimmune disease. But, since my evoked potentials and my MRI are obviously not normal, the doctor is still quite sure I have MS. This is all really frustrating because even though we are all pretty sure that it's MS. What if it isn't? I mean, that's super doubtful. But I've been going through this for a very long time. I've known I had lesions for 7 years. I've been ignored by doctors. And now that I'm not being ignored, I still don't have an official diagnosis. It's not that I want to be sick. I just want answers. So I suppose a mostly sure answer is better than nothing. Turns out pregnancy and nursing can put MS in remission, which would explain why my MRIs haven't shown any new damage in the last year. So basically I'm self treating. Unfortunately, the damage that's done is done. The neurological issues are there because of the lesions I already have. Some things have gotten worse. For example I occasionally lose feeling in one of my legs while I'm walking, and my arms start to go numb as well. That's new and not fun. And of course all of my symptoms are exacerbated by the fact that I only average about 2-3 hours of very broken sleep a night. But sleep deprivation doesn't cause brain lesions.

When I move, my neurologist will be in contact with my next neurologist so they can discuss my situation. I will probably have to go through all of this testing again, which sounds awful. But I need a "second opinion." Which will actually be my 7th opinion in the last 6 years. Maybe 8th. The current plan is to continue nursing. When I'm done nursing I will probably get worse. I'll have some sort of "attack" most likely. So my doctor wants me to go on a mild form of medication for MS. Here's the problem with MS. It's a lot of guess work. There's no one test that says "yes, you're positive for MS!" It's a lot of tests and a lot of educated guesses. In fact, from what I've read and been told by doctors, most people don't for sure know until they are well into it and there's a lot of damage already done. And by that point, medications are useless. So we want to get ahead of it. Hopefully we can slow down the progression. 

I try not to think about it too much. Cause it's kind of scary to think that I need to go on medication to slow down the progression of a neurological degenerative disease that could make me blind, or make me not able to walk, among other things. This wasn't part of my plan, you know? I'm 27 years old! I'm young. I shouldn't be having to think about how I may not be able to do these things. I shouldn't be so exhausted and in so much pain that I can't take care of my own kids. But that's silly. Bad things happen to people no matter how old they are. And really, it could be worse. I try to remind myself of that all the time, but it doesn't make it any easier.

This is a big topic with my psychologist (no shame). I have major depression and anxiety and I can't go on useful meds while I'm nursing. Another side effect of MS is depression and anxiety, so I can pretty much look forward to this being a fight my whole life. But my psychologist is wonderful. We spoke recently about how I need to make goals and plans. This is something I've never been very good at, especially with the depression. I've always had things I want to do, but I don't do them because I don't have the energy or the drive like I did when I was younger. But she pointed out to me a couple of weeks ago that I need to live in the here and now. It's even more true of someone like myself with a neurological degenerative disease. Because the truth is I don't know if I'll be able to do the things I want to do in 10 years. I may lose that ability. But right now I have it. All I have is right now. Today I can still see, though it's a bit blurry. Today I can still walk, though sometimes I have to stop and let feeling come back to my legs. Today the pain in my back is awful, but it's livable. So I wrote down some goals to accomplish now. Or at least soon. And it was a little bit empowering, which was nice because I haven't felt that in ages. I don't have control of a whole lot but that gave me a little bit.

So, I'm planning on starting a lifestyle blog. Like, a nice one. I've been wanting to since Peyton was itty bitty, and she's almost 5. But I've never had the energy. Just self doubt. I see other people doing it that are surely more interesting and much better at it than I am. People that are more positive and upbeat. But, I have convinced myself that it doesn't matter. I've always wanted to write. I love writing. Know what's holding me back? Coming up with a name for the blog. HA! Seriously. That's it. I have a million ideas for what to write about, and almost no ideas for a name.

I'm also hoping to improve my skills with my camera. I've always loved photography. My dad gave me that love. And I need to letter and paint more often. But having the energy for all of this is so hard. I'm working on it.

So, in summary. I probably have Multiple Sclerosis. We're treating me as though I do. I can expect to get worse when I'm done nursing. I'll start treatment then. I've read a ton about MS, and even though there's no cure, I'm hopeful that if we can get ahead of it early, we can slow it down. My husband has been so supportive and helpful and I couldn't do this without him. He's gone to my major appointments with me and for that I'm extremely grateful. I also couldn't do this without the support of my friends locally that have been so kind to help with my kids during the millions of appointments, and when I'm too miserable to function, which is often. Also, if you made it this far, I'm really impressed at your willpower. 

K bye!

Thursday, May 11, 2017

My real answer to "are you okay?"

Recently I've been asked the question, "are you okay?" A lot. Three times within an hour this week. For months I've been saying that I'm just tired and that I was doing fine because I felt like that's what I'm supposed to say. For the record, I am tired. I'm exhausted. My kids don't sleep through the night. I'm a mom. I have to be okay, right? But after talking to my husband and my psychologist (no shame here), I've decided that I need to share that I've been lying. I'm not okay.

I'm no stranger to health problems. My heart defect could've killed me had I not gotten extremely lucky and found it 2 years before my first baby was born. And I was very open when going through infertility. It lightened the burden of the miscarriages and gave me the support I needed. Plus I got to hear from so many women that had either had similar experiences in the past, or were going through infertility issues at the same time and appreciated my openness. After the pre-eclampsia was over with my last pregnancy, I thought that had to be it. I've been through the ringer of health. But I knew that wasn't true. I've known for a very long time that something else was wrong and the doctors I was seeing were just skating by it.

I've had back problems since I was 16. They've just gotten worse over the years and escalated terribly after number 2 was born. Sometimes I struggle to walk around, but I do it anyway because I have no choice. My migraines have been out of control. Just a couple of weeks ago I had such a severe one that I almost called 911. The only reason I didn't was because I literally could not see or speak to do so. My poor kids basically had to fend for themselves for 6 hours. My face droops above my eye. It started when I was pregnant with Peyton, as a sort of aura to my migraines. Now it just happens at random. It's not cute. Peyton told me that I look like Quasimodo when it happens. She's not wrong. I also have a hunch thanks to scoliosis so that's a double whammy! My memory isn't very good. Much like when I was going through the heart defect TIAs that were making me fail my classes, I can't remember things like I used to. Entire days and experiences are just gone. I only know because my best friend and my brother have pointed it out. I've slowly become weaker and shakier. I've had to put down my baby a number of times because I'm scared I'm going to drop her. I drop things regularly, and it always seems to be things that contain messy food or liquid. Of course. And for a few months I've been struggling on the drive home from Orlando. There's a disconnect between my eyes and my brain. It's difficult to explain. It's like my eyes are aware I'm driving but my brain just shuts down. It's not normal to say the least!

Multiple Sclerosis was originally mentioned to me when I was 20. Seven years ago, when they found the lesions all over my brain. The neurologist didn't want to "go down the MS path" because I was so young. I ended up having the heart defect that was causing TIAs (mini strokes) and went on my way. I stopped blacking out while driving and eventually my brain healed (as well as it could) and I was able to pass classes again. I've since had MS mentioned to me by at least one doctor a year for probably the last 5 years. But I was "too young" so they ignored the symptoms and told me that the brain lesions I continued to get were normal.

In December I went to my 6th neurologist. After having an MRI, an MRA, and some nerve testing done, she determined that nothing was wrong and that I was just an exhausted mother. She looked at my MRI that literally shows brain damage and told me that it was normal. She also said that my biggest lesion was the size of the head of a ball point pen. The woman was the worst doctor I've ever met, and I've had a LOT of doctors. She told me I should be happy I had no diagnosis. I was crying. I tried to explain to her why but she laughed.

I was crying because I am in pain every single day. I live at a 6/10 on the pain scale every. Single. Day. Not only does the chronic pain disrupt my life and contribute to my depression, but the migraines, and the slurred speech, and all of the other symptoms aren't normal. I don't know any other exhausted moms that are having neurological side effects. Brain damage in particular. It's frustrating to just KNOW there's something wrong with you for years and have doctors cast it aside like you're crazy. They assume that because of my age and my medical history that I couldn't possibly know what I'm talking about or that there couldn't possibly be anything else wrong with me. I had a neurologist tell me that I have nerve damage in my face, and that was it. She didn't give me a reason for it, just stated it and moved on.

I recently moved on to my 7th neurologist. I've heard good things about him so I'm willing to travel the hour to get to him. The nurse spent an hour collecting my history. It's pretty extensive and they wanted every single detail of my health. I always feel pretty good about myself when talking to these nurses because they're always so impressed with my knowledge of technical medical terms. Not to brag, but I've been around the block a few times. HA! Then the doctor came in and looked at it, talked to me for a minute, and pulled up my most recent MRI. He stopped counting my lesions at 17. They were all bigger than the size of a ball point pen head (like the last doctor said). And he told me they're not normal. He said that just looking at my MRI and some of my symptoms he'd say I have MS, but I need additional testing because my symptoms seem to show other things as well.

I basically have three options. I'm either having TIAs again, which are those mini strokes that usually come before a big one, seizures, or I have MS. He said I could have more than one, but it's going to be at least one of those things. I wasn't surprised. I left that appointment happy. Which is weird to most people. I'm not happy to hear that I could have something that could either kill me or really change my life. I'm happy that after YEARS and SO MANY doctors, I've finally found someone that is putting my age aside and looking at the facts. The fact is, brain damage isn't normal. He showed me my MRI, it's everywhere. I could finally get an answer. I can get the help I need. There's hope that I could feel like a halfway normal person. I don't know what it's like to not be in pain. Is it amazing? I feel like it's probably amazing. Don't take it for granted.

I still have a lot more testing to do, but we so far know I have a lot of nerve damage in my feet, and some in my hands. I will be doing a 72 hour EEG next weekend and a lumbar puncture shortly after that. I have to do it in the hospital because I was unconscious for about 2 hours after my last epidural. My doctor is hopeful that we will have a diagnosis quickly, but told me that it could take more time. But I'm so happy I finally have a doctor that's taking me seriously. I absolutely dread moving at the end of the summer and having to find someone new. It's taken me years to find someone who will listen.

At this point, I take it one day at a time. Some days I feel worse, emotionally and/or physically, than others. But I'm a mom every day, and I have to be okay. My girls are growing up with a mom that needs extra help on occasion. I'm definitely insanely exhausted. All the pain and the issues and the lack of sleep make it hard to function. But I'm told that given the circumstances, I'm doing an excellent job. Probably overdoing it for myself. Actually, I know I overdo it, but I don't want my girls to look back on their childhood and just remember that mommy had issues.

It's taken me weeks to write this. I keep doing it and deleting it. I'm nervous to share this information for some reason. I want you to know I'm not whining. I save that for my husband. HA! But I do want people to be aware of what I'm going through. I look miserable because I am. But I try SO HARD to not look miserable. Seriously. But sometimes it's harder to fake it than others. I am significantly happier now than I was a few months ago. I've been seeing a psychologist and getting the help that I need. And I have amazing friends here in Florida that have been so understanding and helpful to me. I try to be more selfish and take breaks so I don't drive myself crazy. As a mom, I find it hard to be selfish. My husband has been trying to get me to do it for years! Which I find funny now that I think about it. So I am a lot happier. But I look like I'm more miserable because I'm more exhausted and physically going through a lot more.

I guess I want support. It's hard and I think that people that have mental and physical problems have a better chance if they have support from friends and family. I know it could be worse. A lot worse. Multiple Sclerosis isn't a death sentence. I'm mad that I wasn't taken seriously before. I probably could've avoided a lot of nerve damage and pain if someone had listened. But I'm just happy that someone is finally listening. It may not be MS, but if it is, I'm okay with that. Over the last 7 years I've come to terms with it, and my husband and I are prepared for that to be what we hear. It makes the most sense. I'll probably get worse, but at least we will know why. And I'm well aware that it could be worse. I have many people on my friends list that I know are struggling with more than I am. I want to be open about it though. It's helpful to me, and I want people to be comfortable sharing this kind of information. Especially when it's something that's effecting everyday function.

Also, this is why I don't do as much lettering and stuff anymore. Sometimes I find it very difficult to grip my pens. Or see. Or concentrate. I would love to start an Etsy shop and be able to do more projects because I have so many things I want to do. But right now I just can't do it. If I'm given a diagnosis next month, I'm hoping we can figure out treatment options. I will likely have to stop nursing, which breaks my mama heart. But I know it's for the best. I just want to be a good mom to my girls. And to the women that have been able to help me lately, I am so grateful. And I hope that in the future that I will be in a position that I can help others. But at the moment, I'm the one in need of the help. Which is really hard to come to terms with for me. I appreciate all of your love and support more than you know.

Okay, I think that's all. I've tried to reread this but I'm going cross eyed. I don't even know if the flow makes sense at this point. I think I caught all of the spelling errors, but it's difficult to say. My new excuse for everything that I use on my husband and my brother is "I have brain damage." So if this makes little sense or there are spelling and grammatical errors, remember, I have brain damage! If you made it this far, you're amazing. Thanks. :)