My SPS Story

You can say it all started when I was a kid… my parents and family members all knew me as the one that fell a lot. I’d fall at home running around, playing outside in the front or back yard, and even at school, see I didn’t just fall and hurt my arm no I’d fall face first for everything. When my parents took me to my doctor he just said I didn’t have the same reaction other kids have by putting the hands forward and when I would I’d end up hurting my wrist, arms, and knees all the time. So I was a clumsy kid!

When I was in high school freshmen year I was having hard time breathing if it was during band practice or even soccer practice it just seemed like I couldn’t breathe. It was a weird concept that none of us understood. I knew I had this problem because at the beginning of the school year every time to join any type of active activity you had to get a physical, and at that time we had a doctor that came to the school that did our physicals. The first year he noticed some little was not so normal things including like how my right ankle was inverted inwards he asked if it bothered me I said no, since really I just took it was a pain that came from always twisting my ankle I never spoke up about it. He signed off on my paper but did tell me to follow up with a cardiologist which I did. His nurse is friends with me mom so she just told my mom on the side what the doctor had said since she wasn’t there. I followed up with the cardiologist who told me I had asthma he knew my family ass well and family history so he put two and two together. Second he found a heart murmur gave me some meds to take every day for both my asthma and heart condition and I was on my merry way. Although several times during marching band I’d have these attacks were it felt like there was no way I could take breathe, and I’d be in the sidelines with the EMT trying to treat me and they too couldn’t hear air moving.

We’d go back and forth to see this cardio doctor for my asthma till he said you need a specialist for your asthma, and that’s what we did we found a doctor in Laredo who would see me maybe once a week. My asthma got so bad I had to take breathing treatments every four hours at school, during marching practice, during football games, and it just became a point that my breathing treatments were getting in the way of everything. My freshmen year I tried after marching band to get back in to soccer since I was in it before with middle school, but after a few games I just couldn’t do it with all the running and the season being during the cold weather I had to quit it was the first time. I had never quit on anything, but I just physically couldn’t do it! I stuck with band though! Band was it was like a family there, although I’m sure some people thought that I was kept on because they felt sorry for me. But I had a great teacher/director and friends who never let me feel otherwise!

Sophomore year my asthmas came with a vengeance it didn’t want to just one treatment NO it was two treatments at a time. Several times after our halftime performance I’d have to try to run to get o2 because I couldn’t get air. The school nurse at the time was a God sent, because she would run start my treatment and give the EMT instructions on what to do. My band director and the school nurse would wait minutes what to me seemed like hours till the local EMT got there so I could go to the hospital to get treatment and sometimes even flown to where I live now San Antonio. I’d be placed in ICU for days with a continues nebulizer treatment and lay in bed not being able to move doctors didn’t know why, but they always just said it was due to all the medication they were giving me and that it would go away once I was off it. I started seeing a pediatric pulmonologist regularly in San Antonio were he would put me on high dose steroid treatments that would help for a while, but once he would try to take me off them I’d have a flare up. He also couldn’t understand why I wasn’t moving much air in fact he couldn’t believe I was sitting up and talking with the amount of air that was going in and out of lungs. At school we’d joke about it how I only had 50% lung capacity, but in reality that was really all the lung capacity I did have and the doctor worried about it. All throughout high school I continued to see both doctors the one in Laredo and the one in San Antonio. Mostly the one in San Antonio he was the one that would figure out what meds I should be on how much steroids I should be taking, while the one in Laredo was to go to girl she would just see me weekly and when I’d get sick she knew who to send me to and it was always by plane or helicopter.

While in band my band director did all that he could so I could feel like part of band even if that meant me taking picture while everyone else marched or even covering a spot for someone who missed or failed during a competition, since I could learn the set pretty quick even if that meant stay up late just to run the routines in my head.

Leg problems well I had always had problems with my right ankle since I was a little kid it would always turn inwards, and since I played sports and did dance team all of elementary and middle school it would always be sprained. I’d have to wear a special ankle brace to try to keep it stable, but even then sometime that wouldn’t help. It was like a sock that you would lace up as tight as possible that one helped but once I was in band I couldn’t use it. The brace wouldn’t give me the range of motion I needed to march so I let it be. Which caused lots of falls that I thought was because I couldn’t keep my feet together with the music. I guess that wasn’t it the whole time, but I was able to overcome the situation and pursue marching although it meant all those falls and hard times that I would keep to myself.

Let’s go back a bit so you can see what I was able to do with band. Freshmen year I was able to march in Disney Magical Music Week in Epcot. We spent the whole week in Disney and visited Universals Islands of Adventure. Also another BIG thing we did my senior year we marched in The Macy’s Thanksgiving Day Parade and visited New York with my friends and even my family.

While all of that was going on once I turned 16 I also started working at the Disney Store and I’d run from practice to work, and sometimes from a work to a football game. I was a proud of myself I was able to do all of that while being sick, having broken my arms once or twice and dislocating my arm in a car accident. Yeah the dislocation was not cool it was one week before I was to leave to New York with band!

Now being J.B. Alexander High School Class of 2006 I was off to college and proud of it! I was accepted to different colleges and university all over the state, but I knew my parents the farthest they were going to let me go was San Antonio! So I accepted a scholarship at Our Lady of the Lake University, which was the best decision I could have made!

Freshmen year I was in and out of the hospital with my asthma I was getting infection left and right, but I was still seeing my pediatric pulmonologist. HUGH problem that summer I had turned 18 which meant I was now an adult if I went to the ER he couldn’t see me and not even on the floor when I was admitted. The doctor would communicate but it got hard I slowly stopped seeing him and was on my own I was still taking my medication, but it wasn’t the same. I was in college I’d forget every once in a while and that would get me in to trouble, but I was too stubborn to admit it. It wasn’t till my sophomore year when again all heck broke loss!

In the fall of 2007 I was admitted to the hospital due to chronic asthma after weeks in ICU my legs began to hurt and felt them extremely stiff. I told the doctor at the time what I was feeling. She ordered some tests because she figured since I had been laying down for a long time I might have gotten a blood clot. When she came back that night she told my parents that nothing showed up in the test all it showed was that I was a bit dehydrated and had a low potassium level which could explain for the pain and stiffness I was feeling. After a little over a month being in the hospital I was finally released with the pain and stiff cramping feeling still in my legs. The first night I came home I woke up my parents with me screaming bloody murder from the pain and the fact that I could no longer move my legs from how stiff they felt. That morning my mom called the doctor to tell her what had happened, but all she could tell her was that I needed more fluids. So all that day I spent drinking Gatorade after Gatorade, but the pain never left in fact it only got worst.  Once I got back to San Antonio alone one week later I got readmitted to the hospital because of another infection I had that went to my lungs causing my asthma to act up again. This time I was placed on a machine to breathe for me because I couldn't do it myself. The whole time everyone says I was complaining of the pain in my legs. This time I was assigned another doctor because mine was out sick for a while. So this new doctor took over my care and once I was moved from the ICU to Critical care unit I was feeling a whole lot better. Then again SUPER HIGH DOSE steroids will do that to you. I ended up keeping that doctor who is still now my Primary Care Physician! I was finally released once again after a month or so, but soon after I went again and no one knew why. This dang infection kept coming back which would affect my breathing, and by this time the pain in my legs had taken the back seat to this infection problem.

FINALLY some news... My PCP finally told me I needed to see an allergist, because the infection could be coming from all the allergies I have. That's when the allergy doctor came (which I still have) and with new doctors come all these new tests including blood work to see if there is anything wrong with my immune system. Lo and behold there was something wrong with my immune system. I was diagnosed with a form of something called Primary Immunodeficiency. I was started on 24g of IVIG. Finally Winter came and went ... and school was just around the corner. So with my asthma and the upper respiratory infection almost gone I could concentrate with school starting again. So I thought!

A week before school started the pain in my legs was getting worst and I could barely walk my parents began to worry. It was so bad that they didn't want me to start school that semester and suggested that I rest, but I didn't listen I started school the following week with the pain in my legs not getting any better. Someone had to help me around campus since I could barely walk. Finally, one day my legs gave out and I fell on my elbow and dislocated it. When I got to the hospital I was given something for the pain. Needless to say the medication caused me to have trouble breathing and I was admitted because my asthma decided to act up. Once in the hospital my PCP came in to see me she asked the nurse if they had seen me walk and the nurse said “no”. When she asked why, the nurse answered simply, "She can't walk". My PCP began to run test after test to figure out what was going on. My legs were so stiff and my ankle so inverted it was hard to move, and when they weren't stiff they looked like they were having a seizure on their own. No one could explain it even after two neuro consultations. My doctors couldn't do much so after being released two weeks later I was sent to physical and occupational therapy and had to use a wheelchair to get around.

Then I came back to Laredo and saw my orthopedic doctor, who knew something wrong, but he just couldn't explain it. I told him he wasn't the first! I’d been seeing this doctor since I was in high school after all the falls and broken stuff he was my go to guy when something ortho came up. He sent me to get a test back in San Antonio with a neurologist he knew. The neurologist saw all my tests and said I had MS (multiple sclerosis), but since it was out of his expertise I needed to see another doctor.

That's when a new Neurologist came in to the picture. As I walked in to her door my heart started pounding, because I had already read up on what could happen to me if the other doctor was right. Right after walking she started doing her assessment and not long at maybe five min. she asked me to walk down the hall and back. I did what she told me and as I walk back in to her office she looks at me and tells me, “I don't believe you have MS I think you have a rare neurologic disease called Stiff Person Syndrome.” My mom and I look at each other like huh?! We had never heard of that no one had ever mentioned it to us before so we didn't know what to say. Finally my mom ask well how can we find out which is it and she said that the only way to find out is rule out MS for sure by running a bunch of test, and running a GAD antibodies test to see if it came out positive. If the entire test for MS came out negative and the GAD antibodies test came out positive I would be diagnosed with Stiff Person Syndrome. My mom and I stepped out of the office not knowing what to think... all we could do was get all the test done and wait for the results. Finally after two weeks of waiting the doctor’s offices calls and tells me my test are in and the doctor wants to see as soon as possible. When I heard those words I was like that doesn't sound good... right?! We set up an appointment to see her that week and show up in her office when the time finally came. I got called up and walked in to her office I looked at my mom and both of us were ready to finally know what it was that I had, especially after waiting for so long and getting different opinions from everyone. My neurologist starts explain what the results showed and how the test for MS where negative like she thought, but that the test for Stiff Person Syndrome came out POSITIVE!

At first I was like finally!

Then reality kicked in what’s next?

What’s going to happen?

Am I going to get worst?

Those entire questions were going through my head... and as I looked over to my mom I noticed nothing was really going in... Like when people say it went through one ear out through the other that what my mom look like. At this time I figured I better start asking question in order to get information because from the looks of I'm on my own right now. So I did, I asked what do we do now?

·         First -She put me on some medication that I needed to start right away to help improve my spasm.

·         Second -She mention I was already kinda treating Stiff Person Syndrome with the IVIG I was already getting. Only that the dose I was taking was too low, so she higher it to the grams I needed, which was four times the dose I was already taking.

·         Third -Physical therapy! Agh how I hated her saying that, since I had already done that for a while I was not look forward to doing any more of it!

·          Last -She said give it time, because that all we could do see how my body would react to all the medication and changes being done.

So I did everything she asked took my new medication, went to all the appt. I had to go, got my treatment when I needed to, and even when the physical therapy, and after a few week we finally saw a difference. Once my follow up came around she asked how I felt I said fine and told her about some discomfort I would sometimes feel. She mentioned that I doing better but not good enough, so she thought it would be a good idea to see a specialist in Houston that dealt with more cases of Stiff Person Syndrome. We agreed and set up the appointment to see him in the summer. She continued to give me my treatment and things started to get better slowly but they were getting better.

Then the day finally came when I had to see this other doctor to get his opinion on what was going on. I step in to his office this time I'm not scared at all because I figured nothing new I'm going to hear. Well I start talking to this doctor, who may I add was not the doctor I should be seeing, this doctor was another neurologist who would take my case. I was going there to see the big guns and see what to do from there. So after spending three hours with this dude he finally come to the conclusion that he can’t figure out what’s wrong... He didn’t believe I had Stiff Person Syndrome. I was thinking in my head and ya’ll are supposed to be the big cheese in Stiff Person Syndrome... REALLY!? He calls in another doctor who spends a whole ten min. and says I have to agree with doctor number one and say we can’t tell you that you have Stiff Person Syndrome... AGAIN REALLY?! You make me come all the way up here do you can tell me that... I walked out of the room look at my mom and said we are better off with the neurologist who is already treating me for something that has already been proven to be positive. We went back to her and she was in shock with what had happened in Houston. She decided to continue my treatment as is, but just up the dose on a medication to help out a bit more, which in the long run it did.

Finally summer came and went things were starting to look good. My family and I took a trip to Florida for my 21^st Birthday which was amazing! Everyone wants to go to Las Vegas for their 21^st birthday not this GIRL! Disney World is my kind of fun!