Fainting

#StiffPersonSyndrome #Disability #Diagnosis #Health #Pain #Hope

It’s the first time I have decided to tell my story, why you ask? Because during my non stop journey during these long years I wish I had had read more stories and I had been able to reach out to more people… who knows it might have made a difference.

I got diagnosed with type 1 diabetes in 1999, aged 12. Back then I thought the world would end but I realised pretty quickly that this autoimmune condition with the right care, explanation and guidance could be well managed. It changed me but to be a better, healthier and more assertive person.

At a later age i got diagnosed with endometriosis, after suffering from unbelievable menstrual pain and heavy bleeding this too came as a relief, because I finally got recognition and acknowledgement that something wasn’t right.

I could have easily stopped there, it was enough to deal with, but at least I had the tools. The more difficult battles came later. I am 35 years old and in 2017, after the return from a trip I felt something had changed in my body. Being so in tune due to my diabetes and endometriosis I knew something wasn’t feeling right.

My long road to a diagnosis and recovery was just about to start, and I had no idea what a rollercoaster ride it would prove to be.

My symptoms started with the digestive tract and autonomic-dysfunction symptoms that were quite intense. I couldn’t digest food normally anymore, I kept fainting and having tachycardia, I was diagnosed with extremely dry eyes and to some extent dry mouth — but because no blood tests or exams were showing anything (except a positive tilt table test which confirmed my POTS diagnosis), I went from doctor to doctor (about 25) being called crazy, that I was having panic attacks and that things were all happening in my head. My back started hurting in an abnormal way, I had an MRI done and they found a bulging disk; eureka they thought they had an answer- although we couldn’t be further away from the truth. I was treated for the back pain with cortisone injections, but it did nothing and I kept getting worse, more tired, more pain, started noticing stiffness and some reduced movement. Most importantly I started feeling like my life had been put on pause. I couldn’t do things the way I wanted to or simply wasn’t able to do them anymore. However, the worse was having no one believe something was wrong and getting dismissed by all the medical community.

My body gave up in 2019 because I kept saying something was wrong and no one was listening, no one had answers and I started having non epileptic seizures. For the doctors this was a miracle because they could finally say something was wrong but not wrong. In fact, it was my body’s way of screaming that something was really worse and that it needed to be addressed. And yet the doctors focused on the functional symptoms that were obvious and easier to treat and kept dismissing all my complaints about weakness, stiffness, tiredness, and that all these feelings couldn’t be real and that everything was all in my head. In their eyes, I held the key to getting better, all I had to do was do some cognitive behaviour therapy, relax and life would be back to normal in no time.

With a lot of determination and focus I started trying to eat healthier and be my own advocate and tried sports which helped tremendously although I was always conscious of this pain in my back that would never really go. At the end of 2020, all my efforts went down the drain and I started noticing stiffness and weird sensations all along my right hip, leg, and plantar fasciitis. I went from being able to run and exercise four times a week to not be able to twist my torso properly, not being able to bend to pick things up, to not walking properly, to finding it difficult to go up and down the stairs and to stop being able to do simple tasks. Things deteriorated quickly. I was lucky to find a neurologist who listened to me for 2 hours and took a look at my entire history when she finally said : “We will of course do all the tests that need to be done, but it’s not all in your head, I think you have something called stiff person syndrome.”

And for the first time in 5 years came a wave of relief, while I saw the distraught look on my parents faces as they started googling what this meant, I felt peace because for the first time I felt acknowledged. In retrospect it only dawned on me a few months later what a challenging and life altering diagnosis this meant but the day I got a real diagnosis a part of me started to live again and with it came back determination to get better. If I had finally found the disease I could do everything in my power to get better.

This is when I started researching, reading, and looking for answers and I realised how little was available but how could it be any different if I was the 1 in a million, of course things were going to be difficult.

Aside from having a great neurologist in my home country, I decided to research and go see who the best doctor for SPS was in the world. My research led me to Dr. Scott Newsome, John Hopkins and the SPS Foundation. I couldn’t be more grateful for having Dr. Newsome as my head neurologist and part of my team alongside my doctors back home and now becoming a part of the SPS foundation community.

This year has been tough and challenging, finding a treatment that works is still an arm length away. I am doing much better than at my worst a few months ago when I could barely stand, where all kind of noise and visual stimulation would put me in a terrible shape and where I thought things couldn’t get much worse. I will admit it is hard to accept especially at 35 that your body will never be the same. It is hard to see it not cooperate, to have to walk with a cane and to ultimately know this is a progressive disease with no cure. But this has pushed my determination to speak out, want to raise awareness and to be part of the solution.

I will not dwell on the challenges I am facing and their difficulties, anyone who has SPS will know exactly what I am talking about and how much it impacts your life and the people around you.

I will instead choose to focus more on raising awareness, on not being ashamed to express how I feel, to never retract from life or not express when things are hard and to mostly tell people YOU ARE NOT ALONE. Listen to your body, your gut instincts are so on point, if something feels wrong than it is most likely wrong. Fight to be listened, heard, cared for, never take no for an answer. I learned the hard way and I finally got heard!

Thank you for the SPS community for allowing me to tell my story and hopefully inspiring others to share theirs.

stiffperson.org

I had gotten dysautonomia after a doctor gave me the wrong medication back in 2007 that caused temporary psychosis and I was left with nervous system damage that nobody could even tell me about. As time went on, I stopped being able to eat because of the severe pain, nausea and vomiting that would occur from it, before developing what i now know its POTS. For over 10 years, every cardiologist i went to refused to test me claiming that it was either all in my head or that I was too young to have a heart issue. I began fainting constantly and having SVT episodes but I didn’t even know that it was SVT until years later because doctors and hospitals just don’t care. One time, i went to the hospital after having a severe svt and my blood pressure dropping and staying low at 62/45. Instead of helping me or even taking my blood pressure, the er staff punished me but tieing me to a bed even though i was not acting like a psych patient, and sending me off in an ambulance after injecting my arm with a intense dose of Ativan even though I was fine and willing to go, to A psychiatric hospital. The therapist there didnt even know why i was there because i was emotionally fine. Unfortunatly for me, having this on my record would make it completly impossible to get any doctor care whatsoever in the future for my illness. For some reason in the good ole USA, mental health discrimination is a severe issue in the medical field. If you were ever diagnosed with anything such as anxiety, you will be written off as crazy. I ended up having an ischemic heart attack and my heart almost exploded from having an SVT but according to Dr. staff it’s always all in my head. I became bedbound for years. Every friend but one deserted me or bullied me. My family hated me. I woupd just lay in bed staring at the ceiling day and a day out praying for death. I ended up getting two ablations on my heart tht saved me and i had to teach myself how to walk. The day I used my walker to walk to the house next-door and back was the best day of my life and I filmed it and posted it on Facebook. All i got was an inbox of harassment and bullying for it from those are used to consider to be my best friends, my sister. Just when I thought I was getting better I suddenly started getting anaphylaxis to all my food. Trying to explain this to ER staff kept landing mean in the psych section of a hospital, being interrogated instead of helped. I’ve been thrown out of wheelchairs because they didn’t believe parts was real at a hospital in front of many people and nobody cared. I was always left shaking and crying on the floor somewhere well passerby‘s just look at me like I’m crazy because I’m terrified of the nurses because they are bullying me and abusing me. There is absolutely no way to sue nurses doctors or hospitals nowadays. And they know it otherwise they wouldn’t do this stuff all the time because it’s not just happening to me. One time, i had to camp in a hospital parkinglot because I had not eaten in six weeks because everything I put into my mouth caused severe anaphylaxis and I couldn’t keep injecting myself with EpiPen‘s. The hospital refused to help me so I camped there. On the fourth day, I started getting anaphylaxis after taking the medicine that I’m supposed to take every day and have been for years. I went inside of the hospital clenching my neck at the front desk all the way to you laughed hysterically with a friend of hers on her phone while I was frantically motioning to her to help. She gave me a dirty look and turned the opposite direction. I started panicking because who wouldn’t? Only was completely ignoring me and thought my suffering was funny. She didn’t turn around and woth a sarcastic rude voice said, “ughhh can i help you??” I could barely talk at this point but I couldn’t see straight because my blood pressure had dropped and I was trying to tell her that I need an EpiPen and she kept chewing her gum and snapping at me, “well we cant save you unless you sign in” she knew I couldn’t sign in. What are they do for trauma victims who can’t sign themselves in? refuse to save their life? I tried to sign and I kept falling over a little bit and I couldn’t see the paper and I was frantically trying to breathe and so I fell on the ground. She nonchalantly said “well then i guess you dont get help then oh well” and went back to chatting on her phone and laughing. I was going to die. I was surrounded by people and again no one cared. Two male nurses came out looking down at me shaking and crying on the floor trying to breathe while I was gasping for air. “ oh your fine you’re still kind of breathing hahaha!” They came in raged that they were murdering me. Well I was struggling to stay alive and in a rage and fight for my life, I was crying hysterically so they had security physically pick me up and throw me out the door onto the concrete which spilled all the contents of my purse all over the ground and I laid on the ground scraped up and bruised from them just dying in the sun while two ambulances were right next to me woth ems crew in them, and nirses and people walking right by me. Everything started going black. Just a passerby stabs my leg with her EpiPen. All of those people still work there. Nobody cares. I think getting treatment for PTSD from it all but unfortunately every time I have to go to a doctor or hospital I have to face the ones that tried to kill me. Every time I have a new doctors appointment I already know that I’m going to be bullied and I always am Which causes another PTSD attack and then I am the one looked at his crazy when they’re the ones that don’t do the job. I am seeing it from so many people nowadays more so than ever. This happens to people at such a high rate and it’s not being talked about and nothing is being done about it which is why I decided to write a book all about it. Im still working on this medical book which also has interviews with doctors and patients in it. It needs to be talked about because it’s not just us that deal with it it’s at an alarming high rate. I suspect that I have mast cell activation syndrome but I’ll never know because every doctor bullies me about it. I even was sent out to get a bone marrow biopsy but the guy performing the biopsy laughed in my face and called me a joke and I wasn’t able to get it. I’ve had swollen lymph nodes for years that have never gone down and I went to get a biopsy of it and was bullied horrendously for it while they told me it was probably just a cold even though it’s my doctor that sent me out for the test. In fact in all of these years I have only come across two out of thousands of different kinds of doctors and nurses that were actually decent human beings. It doesn’t matter if they can help me at all, what matters is they treated me like a human being. If you don’t know and you know you can’t help me tell me that don’t bully me because you don’t want your egos crushed. Majority of us had to become our own doctors so in many ways yes we are the experts. I think a lot of doctors are put off by this but it’s just the truth. We the patient, are the ones that spend years upon years studying medical journals studying the brain studying cells in the body studying odd illnesses from refutable doctors around the world and their writings, we have learned how to read MRIs and such why? Because we are our only advocates and we are the only ones that are onto something. We know so much about our own illnesses that doctors need to give up their ego trips and learn from us. Another thing I need to tell people is I’ve learned that if you ever get a test done, always go pick up every copy you can of the results because the doctors will nine times out of 10 always lie to you about your test results.