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.