The Good the Bad of my Life With Stiff Person Syndrome

So right after being told I HAD to go to the Mayo Clinic my family went in to HOLY CRAP mode! How the heck are we going to get there!? How's going to pay for everything?! Does the insurance cover everything?! ALL THESE QUESTION! But with the quick reaction thinking between my cousins and aunts they came up with the idea of a steak plate sale and other crap ola! Everyone starting throwing ideas after ideas of how to get things, how people donate things and how everything works. Finally we got a cheif and the indins started to follow! lol. So everything is planned for April 24, 2010!

My mom calls my neuro doc. and right away they see us. She is amazed at the fact that she wasn't called because if it was for her I should have stayed there. She ran blood work and gave me a steroid boost. Since I had just had my IVIG a week prior. Afterward she said she wanted to see me the following week and begin pt right away. Following week, I started school and didn't know what to do. I emailed all my teachers who were some what understanding. Yeah NO! To let them know the situations that was going on. Since most of my classes where online I didn't have much to worry about except my A&P class, but at least he was the one and only teacher that understood. So the week started and so did pt evaluations, more doctor's appt. and extra treatments. AGH I was starting to go even more crazy then I already was! jk. My neuro started me on a new medication called Keppra that's suppose to be for seizure but seems to work for spasms as well. Did good for a while. My mom...

I started to get ready for school, which meant having to see all my Docs. before school starts to make sure I have the OK! PCP was first... Everything looked good heart rate a little high, but she said nothing to worry about. Endocrinologist was second... Blood work came out so so... sugar where getting better, but not great! Allergist came in third... Lung where OK she wanted to start me a new medication called Zolar for my allergies and to improve my lung function. Exam when OK just with my heart rate going crazy again! She took a note of it and sent it to my PCP. Then Last came my neuro... Spasms were OK kinda... medication was starting to work better so she gave me the all clear! Finally got registered for school and got ready for a long semester... Who would have though long would be the understatement of the year. Once school started I had the regular mumbo jumbo about me being and getting sick which got straighten out with one phone or letter cant remember from my PCP. Classes ...

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 l...

What is Stiff Person Syndrome... Stiff-Person Syndrome Information Page: National Institute of Neurological Disorders and Stroke (NINDS) : "Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. People with SPS can be too disabled to walk or move. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutam...

My names Vanessa and I’m attending College to eventually become a Great Doctor. I’m taking it slow because I’ve been force to face obstacles that most people wouldn’t be able to handle. When I was 20, I was diagnosed with a rare neurological condition called Stiff Person Syndrome, and because of that I’ve had to put some things in hold to be able to overcome what I’ve got to face. I attended Our Lady of the Lake University in San Antonio for two years as Biology Pre Med major. I miss OLLUSA, but hope to go back someday to finish off what I started. If not I’m sure I’ll be able to get my degree elsewhere and get to achieve what I hope to become. I love my family even though they annoy the crap out of me sometimes. They are a big part of my life no matter what they say or do sometimes, and with that said I will always love them. Lately we have been able to start up a new company that has brought our family closers than ever. My friends also play a big role in my life because without them...

I'm living with SPS better known as Stiff Person Syndrome and many other medical conditions is who I am. Don't get me wrong they are not all I am. For I'm the one person you'll meet that has more going for her self then you can ever imagine. See I've learned to live my life with an optimistic attitude, because if I didn't I wouldn't be where nor who I am today. With family by my side I've been able to over come all the obstacles put in front of me. AND with that said and done I'll explain my story with SPS and all the medical thingys going on.