SPS Please Help For Recovery
It took more than 5 years to get a proper diagnosis of SPS. All that time, I knew that something was wrong with my central nervous system. I was hyper-reflexive, had decreased movement and muscle spasms along the entire right side of my body. I couldn’t breathe – even though I was on 60mg of Prednisone and had two inhalers. It felt like 30 people were sitting on my chest with sharp chest pain, shortness of breath and the right side of my rib cage was completely collapsed. And over time I could not sit in a chair or ride in a car. I could not perform daily activities and was progressively getting worse, no one knew what to do and I was dying.
The top medical centers in the country kept misdiagnosing me. Cornell in NYC did my spinal tap but didn't know what to do. I sent my medical records, which included MRIs and more than 50 pages of blood work and EMG/NCV results, to the prestigious Mayo Clinic in Minnesota. They said they had nothing to help me.
Johns Hopkins misdiagnosed me twice. Seven years ago, they told me to stop all the medications that were keeping me alive and prepare for the worst case. They did not even consult with my doctor in New York City, who was helping to keep me alive with very specific medicines. He wanted to try IVIG infusions as the next step to help me since he and my Immunologist knew I had some type of autoimmune mediated neurological issue, but were still trying to diagnose it. Johns Hopkins told me not to do the IVIG treatments at all and get a wheelchair if I needed one soon.
Right Treatment: First Time I Could Move My Head
In 2009, after my second misdiagnosis at Johns Hopkins, 3 days later I tried IVIG infusions with my Immunologist in NYC. In my heart, I trusted these doctors, had faith that they really cared and knew what they were doing. The first week, I had 3, six hour IVIG infusions that my Immunologist specifically prescribed to help boost my immune system. For the first time, I was able to move my head an inch – what a relief after so much time spent as an immovable brick wall. That was when my Rheumatologist really knew we were on the right track. So I was on twice-weekly, high-dose IVIG infusions for a year. The treatments provided some relief and helped my brilliant rheumatologist finally make the proper diagnosis of Stiff Person Syndrome.
I achieved progress in my fight. I taught myself how to walk again in a swimming pool. But, I was plateauing. My medical team referred me to a famous New York City oncologist known for innovative treatments. She administered a round of non-FDA approved chemotherapy. It was difficult to get the drug. No hospital would even admit me as a patient since it wasn't FDA approved, but my life was on the line and it was my only chance.
This experimental treatment wasn't covered by my health insurance since health insurance doesn't pay for experimental procedures. The first round didn't work, but my team was aggressive and created a protocol to give me a second round. It put my “anti-GAD65” into a blood level antibody remission. I am so thankful that it worked to save my life.
However, years of an elevated anti-GAD antibody badly damaged my muscles along the right side. For over the past seven years, I have been doing a weekly regimen in NYC to work on the damaged places along the right side of my body to help get more movement back, inch-by-inch, and breathe better.
Rare Diseases: No Foundation. No Wristbands. No Help.
I urgently need help paying for essential items in order to survive and keep going with the rest of this recovery. At the moment, my recovery efforts are beating the latest research study results and have been making medical history worldwide. My treatments have been very expensive though. I haven't been able to work for over a year, and have critically needed money for basic living expenses and medicines, along with the specific treatments I need to heal my body and recover. I was trying to work a part time job best I could with my face blown up on 60 prednisone, heat patches on neck and ribs, leg taped up, limping in badly with my cane hiding it so that I wouldn't be discriminated against and a wrist brace on with an IV needle under my shirt and an inhaler in my bag. Not safe to do, but I was hurting myself trying to work part time to pay for treatments I desperately needed to make it this far otherwise I would have died or be permanently in a wheelchair with no hope for ever healing.
Patients living with rare diseases struggle like any other patient. But, more often than not, it feels like fighting for life alone in a world that doesn’t truly understand the challenges of having a very rare illness due to a lack of support, misinformation, and a lack of charitable organizations or adequate social services, along with many state systems that are very poorly run, in addition to a largely broken healthcare system.
If I had a more common illness like cancer, MS, ALS, Leukemia, there would be a big medical foundation for financial support and many other types of assistance. With SPS, I haven't had that and it has been a situation in need of dire help. A friend graciously offered to run the New York City marathon in my name to help raise money for my medical bills and recovery. They said that SPS is too rare, and since I don’t have cancer or leukemia they couldn't help me. So they suggested I set up this page to get help with fundraising for expenses needed to save my life and make a recovery.
There is no medical foundation for Stiff Person Syndrome. It's extremely rare and poorly understood by the medical community. My medical team in New York City are the only people who know how to properly treat me, and we have been making history worldwide. It is a miracle of God and medicine that I am alive, and I am thankful for each day and anything positive. Please help me get urgent support needed by donating to my page, and sharing it with your friends, colleagues, churches, community groups, synagogues and other people who can help me. Getting more support right now will literally make a life saving difference during critical times. PLEASE DONATE TODAY TO HELP ME GET TREATMENTS URGENTLY NEEDED TO HEAL AND IMPROVE ALL FUNCTION.
Last Friday, the medical transportation system which is very badly run by the state got me to my appointment late - which I can't ever be late for, each session there is a lot to get done, Sean has a full schedule, and other people waiting after me for their session. Sean worked fast, hit the spots I had to mark out in red pen to help get the most progress, and we got some decent work done on my neck, shoulder, upper ribs and breathing muscles. The medical transportation is supposed to pick me right up and take me straight home to rest in bed so I can recover from that type of very skilled painful work. They were an hour late, I kept getting the run around saying to wait for a driver on the street who didn't come. I tried to sit in the Starbuck's 2 doors down but I can't sit in a hard wooden chair much at all without hurting my neck, back, ribs, etc. I tried to call the customer service number and was put on hold for long time. It took over an hour for the transportation to pick me up and by the time they did my whole body was hurting a lot because I cannot stand on the street with my cane or be stuck sitting in a hard wood chair for too long without getting hurt. So I made progress with Sean, but it was ruined because I can;t wait an hour trying to stand or sit in general - and especially after a treatment which was painful to make progress and costs money ($70) each time. By the time they picked me up finally I could barely make it to the car and couldn't sit too well getting back home. Once I got back I had to go straight to bed and felt worse than before the session with my low back and ribs very irritated. I couldn't do anything but lie in bed with heat and try to calm things down. It took all weekend to try and get back to baseline - and the worst thing is that Sean did a great job and I had relief from the much needed session with him - and then the careless broken medical transportation system messed that up. Sen Stack is aware and was trying to fix it for my situation - but it has not been resolved all year. If anyone wants to call Sen Stack to advocate on my behalf that would be helpful. He has met with me, I appreciate anything he has helped me with yet if I had a support network of people to help make calls it would be more strength in numbers. If I had MS, cancer, leukemia or ALS this would be on the news by now. And I'd have many people to call with a foundation and many people calling so this type of thing never happened to begin with. My body has been through a lot - I'll do anything for making this recovery but can;t endure anymore abuse due to broken systems or neglect.
I can't be in that situation ever again and really need money available so I can call a car to get home safely since that is the only safe way from NYC.
Can people please donate money this week to help cover transportation costs so I get to much needed treatments safely??
I have to go back to see Sean this Friday, and need to get there on time and back safely.
I have to go for a needling session on my right side tomorrow which I have to drive myself to very precariously and carefully to literally help save my life. The needling sessions are very important, and I have to prepare a list of points in muscles that need to be precisely hit with Christine, each session makes a difference, I could use more sessions yet am trying my hardest to maximize each session I have available to me. And I appreciate Christine's time, skill and help with my recovery process. My body is healing, yet I can't get the progress I need without more support and donations to this page, and caring people in touch and doing things around me to help out.
PLEASE HELP ME AS SOON AS POSSIBLE
The thing is, if I had more people listening to the truth of what I've been saying for over 6 years and supporting me in adequate ways that were healthy and positive from the beginning - I would be healed by now and have my life back in a much more stable and better way. Not hearing from people who know of my condition, or having delayed responses about seriously important and time sensitive issues has caused many damages physically, financially, and emotionally that are hard to dig out of without having support systems of people who are kind, helpful, regularly responsive, appropriately communicative and caring.
For example, other people with SPS are in wheelchairs (there are approx 400 in the USA, likely more but many are misdiagnosed or dying like I was). Yet they all have people taking care of them, friends, family, community members, churches - all organizing fundraising events like bake sales, charity dinners, selling wrist bands, T-shirts - in addition to raising $150,000.00 on their gofundme pages because they have had every person that knows, loves and cares about them begging people to donate and make a life saving difference. That is the type of efforts required for SPS - and I cannot do it alone.
I need $5,000.00 raised urgently this month to handle a huge avalanche of things that has put me in terrible situations due to a lack of supports in time.
In January of this year I almost burned to death because I needed to get a few essential items, my leg and ribs gave out so I had to sit and rest and something caught my hair on fire due to negligence. Over half my hair burned off my head unevenly and I have a second degree burn on my forehead that I've been trying to keep healing and hide the burn and gaps in my hair to look as normal as possible so no one else makes fun of or discriminates against me, and it's still a daily reminder every day of my hair on fire, pain on forehead that I try to forget about as best I can in order to try and stay calm and live another day. That fire would have been avoided if I had people to call for help or extra money to have certain things delivered. For 5 years I have written on this page that often I have to not eat food in order to get the treatments I need, and not much was done to help that for a very long time. My Rheumatologist has my weight loss documented in my meticulously written medical record, and he was dismayed with the weight I've lost even though I've tried hard as I can to make it and hang on, and asked what happened to my face and hair since he knows me well for 9 years and could see a difference. He is extremely upset, and very much wants many more people to donate to my page so I can keep going safely, avoid further harm that is preventable, and make the progress he knows is achievable with proper treatments and more supports, so I can be in much better conditions and feel significantly better by my birthday which is in 2 weeks. Please help me achieve my greatest wish and goal to get my life back more stable with less stress this month.
I have been making progress against all odds which is a miracle and hard work - yet I need significant help to keep going and stay safer all around.
The other week I had difficulty with power and my phone, which I've been having trouble with for a long time, it died shortly after. So I was alone with no way to call for help. I tried to hang on the best I could, but after a while had increased problems breathing, with coughing/choking and trouble moving around. So I had to carefully go outside and ask a stranger on the street to please help me get a taxi to the hospital since I was in a flare up and medical emergency situation. The local ambulance would only take me to a local hospital, even though I was showing them the medical note from my Rheumatologist that I have to carry with me at all times which explains my diagnosis, severity and medications. No other hospital in the country/world knows how to treat SPS properly other than my specific medical team in NYC at Mt Sinai UES. A lady finally helped me get into a car that I had to take to the hospital alone and I was praying the whole way there to make it OK.
Things were a blur as I was in my glasses that I can't see well out of as they are 8 years old and by that time breathing was very difficult. My Pulmonologist was paged and thankfully she came to my bedside in the ER and admitted me under her care. I am thankful she was able to call and reach my world famous Rheumatologist on his cell phone at home. He had to retire at the end of 2017 at the age of 90, and he is truly the only main doctor that knows best how to treat me. He has worked with my Pulmonologist for over 40 years - he called her in for consult on her cell phone in 2016 after NYU damaged my leg badly and I couldn't walk so developed bronchitis/pneumonia and was in the ICU then. She was a great help in stabilizing me and getting my breathing under better control through several off label medications - since there is nothing FDA approved for SPS specifically. My Neurologist was also paged, although I didn't see him for a while.
The next day, my Rheumatologist came from home to me and was very upset to about the flare up I had which was a result of delays in getting urgently needed help and could have otherwise been avoided. I was so thankful to see him, we both cried at how far I've come working together for the past 9 years, although the past year has been much more difficult and we have been trying to help guide my new Neurologist who has been very good, yet in his 35 years of practice has never seen or treated SPS and said it's a real medical history making miracle to get the results I've made this far. My Rheumatologist had to instruct my Neurologist to fill out more medical forms for PSE&G and had him write an additional note they required. My Neurologist's admin was kind enough to post it to this page since they all know I've been in need of more significant supports and donations to my page.
My medical team is world class, truly caring, and have worked hard. Yet there is no foundation to assist SPS - so I really need more donations very urgently - that is the biggest thing holding me back these days. I taught myself to walk again in a swimming pool while on the IVIG dragging my leg since parts were stuck and did not work. My Rheumatologist said he was proud of that, since otherwise I would have been in a wheelchair permanently. They are all upset I have lost weight, at 98 pounds it's the thinnest I've been in over 20 years. My Rheumatologist knows I have been "holding my own fighting an uphill battle against the wind" - his words to me, but I can't go on this way unsafely alone and have been needing more support for many years and people who check in regularly to see how I am doing, if I need anything - which is usually considered decent common courtesy for anyone who has been so sick. People were asking me things like who takes care of me, who brings me groceries or makes me food? All I could do is shake my head and say, no one. That has been extremely upsetting to my medical team, and heartbreaking for me as well. They said it's inhumane for it to be this way, and if I had a stroke, ALS, cancer, heart surgery, MS, or even a hip replacement it would not be this way since those illnesses are either not as crippling or severe, or they also have at least million dollar medical foundations to help advocate and provide many forms of assistance for people to survive and make a life saving difference. I don't have those very critical things, which has taken a heavy toll on my health, in addition to being horrifying since there are people out there who know of my situation and can make a big difference by donating and showing caring and support in other ways. I was in Mt Sinai for a bit, and they gave me food, medicines, warming blankets to help my muscles They don't want me to be alone in oppressive conditions, yet I can't live at the hospital either. They know I really need to rest in bed, with heating pads, use cold laser machine, have less noise, and attend my treatments with Sean and the needling sessions regularly/weekly for best results with making more progress. I also need supports physically, financially, and people I can call for help who will be there for me, especially in times of crisis or emergencies.
Kelly, my thoughts and prayers are with you. I have lived w chronic pain since I am a kid. None of the answers or treatments have ultimately were correct. I have good reason to believe SPS might be my issue. I have always researched my situation and have really been the guiding force to my own healing. I am in NYC. Wondering if we can have a chat. I am interested in your team. I am wits end here, and any guidance will help.
I have been diagnosed as having stiff-person syndrome. I have only one comment it hurts like the dickens. The muscle spasms in my right leg and right foot were awful. The pain is unbelievable. My life was been turned upside down. Depression has a new meaning and having high anxiety is no joke. I try to stay hopeful which i was able to overcome the mess withy the help of natural organic herbal product. conatct https://totalcureherbalfou5.wi xsite.com/herbal/contact / Totalcureherbalfoundation@ gmail .com to get your herbal remedies self-medicate to cure with the daily battle with this stiff person syndrome.
Thank you for all of your updates. I am helping a newly diagnosed young man and much of your information is so timely. We are working hard on finding more current treatment options that don't further compromise him.
I have watched Kelly struggle for the last three years to get the treatments she needs while trying desperately to stay afloat financially and make this recovery. The good news is that she could really make a full recovery by the end of this year if she gets the help she needs. Right now, Kelly is in a critical situation from years of falling through the cracks of our healthcare system and a lack of help or foundations. The result of that is falling behind on monthly payments for things we all take for granted, and being fined bigger and bigger penalties that jeopardize the roof over her head. She can't make it with no support. The money you donate not only aids her recovery, but it helps keep her from being homeless and losing everything she has. A little goes a long way, so please, please donate!
Sending healing light to Kelly Ann!
This wonderful young woman is fighting the fight that you cannot imagine. She endures excruciating pain and inexplicable chemotherapy treatments, as well as physical therapy wherein her body is painfully manipulated so that she may find a bit more movement. In the face of it all, she manages to provide comfort to others through her in the medical field. She is bright, loving, funny and empathetic to others. I am bewildered that she is walking this walk alone. With friends and relatives aware of her situation, I am in complete dismay that no one steps up to lend a helping hand, a comforting phone call, or an offer of something as simple as a lunch date once a month. Kelly Ann, my heart is with you. You are a survivor and Our Father is so proud of you. You have my prayers and support each and every day. When my financial situation improves, I will send what I can to help you out. In the meantime, I am informing my friends about an illness called Stiff Person's syndrome (what it is, treatments and prognosis) and a miraculous young lady whose name is Kelly, who continues to fight and beat the odds.