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.
My medical team is world class, yet as a PT and a patient with a very rare illness I have to guide them through every treatment session to achieve maximum results. The lack of awareness and research leaves SPS without an accepted treatment protocol so everything is considered “experimental”. This is the argument my insurer makes to not-cover my treatment. It is all very expensive.
And yet, I am a study-of-one beating one in a million odds. My Rheumatologist knew that there wasn’t going to be a study or clinical trial any time soon to help out, since the NIH and NORD had already failed to take action on SPS. We fought hard against the ignorance in the medical and healthcare community to make recovery possible. Someday I hope this will become an accepted treatment.
Without a doctor who believed me, I would have died 6 years ago.
I CAN’T GIVE UP
Despite the unbelievably expensive costs, I need to keep going for my critical treatments to get better and fully recover from this. Getting around is very hard because I can’t use crutches or a wheelchair due to the stiffness and difficulty breathing. Even if I could use a motorized wheelchair much of our society is still not wheelchair accessible. I use a cane and keep my right leg taped up for support.
Living with Stiff Person Syndrome requires pacing myself, but if I ever stop progressing or even slow down, my muscle damage relapses and locks up and I lose my hard-won progress. I am at risk for dying at home, alone, frozen, unable to move.
WHAT STIFF PERSON SYNDROME NEEDS – WHAT I NEED
There is no medical foundation, community support or celebrity face of SPS. No ribbon, no race for a cure. What the Stiff Person Syndrome community needs, what I need so I don’t die, is an attentive network of personal and medical support and sensible insurance coverage to pay for medically necessary treatments just like anyone else in this country with a major illness.
Other people with SPS can be helped like I have been if we could raise awareness. But I have a long way to go. That’s why I tell my story. With assistance and support I could be doing a lot better.
My Rheumatologist has said that I have suffered greatly, had to make real sacrifices but that I can also help others with my story. I am thankful to be alive to tell it, and really need more people to listen and step up and be supportive so I can complete this journey and so others with this rare disease can have hope.
STIFF PERSON SYNDROME RARE DISEASE
SPREAD THE WORD
FROZEN, ALONE, UNABLE TO MOVE – STIFF PERSON SYNDROME
Ann's Stiff Person Syndrome could kill her in a terrible way. She could die, alone, frozen and unable to move or call for help.
STIFF PERSON SYNDROME RARE DISEASE
BEFORE STIFF PERSON SYNDROME
I have been very sick for the past 12 years. It started in my neck and my lower back – sudden, painful muscle spasms and rigidity. It went down my leg. Then my foot would go numb. I would fall suddenly because my right leg would give out under me. There was a constant sharp pain in the right half of my body. I would stiffen up doing basic tasks. ‘Pushing through it’ only made it worse.
STARTING IN THE DARK
I saw specialists and had tests, but no one had answers. A few doctors told me ‘it would get better’ and prescribed physical therapy (PT). I did PT every day on my own (I’m an experienced Physical Therapist) but also went to skilled sessions where we tried everything in the book (and things not in the book) trying to find a way to make improvements.
I only got worse.
Pain went up my spine. My rib cage collapsed on the right side, distorting my back and shoulder. Walking and moving were almost impossible. My chest felt weighed down and I had shortness of breath and difficulty speaking, even at rest. My neck was completely stuck. At this point I was significantly crippled. I was dying.
TRYING TO FIND A DOCTOR WHO COULD HELP ME
I went to Johns Hopkins twice but they misdiagnosed me. They were not thorough and they didn’t listen. They even directed to stop taking the only medications that were working for me at the time and without them even consulting with the doctors who knew me. After such negligence I could no longer trust them. I never went back.
I also saw an Immunologist, who within 5 minutes could tell that I was very sick. He took over ten vials of blood and gave me an inhaler. I got a call a few days later to tell me that my blood had some immune system abnormalities, and we needed help getting a diagnosis. He referred to a world-famous Rheumatologist in New York City known to be an excellent diagnostician. I didn’t know it then but that referral saved my life.
When I saw this new Rheumatologist, he could see I had difficulty with all of my movements. He studied my extensive medical records and called me from his home later that same night to start me on a 2-week trial of 40 mg Prednisone. It helped. That led him to explore a systemic cause for my symptoms.
He studied me carefully for months, taking lots of blood and gradually giving me more medicines that helped me. I was started on high dose intravenous immunoglobulin (IVIG) in 2010, twice a week, 6-hour drips. For the first time in many years, I could move my head an inch to the right. It was a major sign of hope and progress! We concluded I had an immune-system mediated disorder affecting my central nervous system (CNS). He diagnosed me with Stiff Person Syndrome.Treatments continued and we documented it all carefully.Stiff person syndrome1stuff person syndrome 2
We worked together like a team. He listened to me carefully and respectfully. He didn’t dismiss my ideas or reduce me to a medical record number.
A DESPERATE ATTEMPT
After a lot of hard work I made progress, but I was still very unwell and starting to plateau. My Rheumatologist got an idea. He called in his own personal Oncologist. He asked her to get me a chemotherapy drug he believed would help me. It had never been tried for Stiff Person Syndrome before but had been successful with other autoimmune diseases.
It was not FDA approved and was quite difficult to get. This Oncologist was the only one in the country willing to go through the numerous levels of medical appeals needed to get the drug. She worked with me in her office since the hospitals (which knew nothing about SPS) would not admit me.
WINNING A BATTLE AGAINST STIFF PERSON SYNDROME
The first round showed promise so together they created a special protocol and gave me another round 3-months later. This resulted in a blood level remission and stopped the attack on my CNS! It is not an exaggeration to say they saved my life. Yet, I was left with extensive right-sided muscle damage from suffering for years untreated and misdiagnosed.
youtube needling: https://youtu.be/g66FJHs2kjw
deep tissue needling technique
Since that experimental and successful chemotherapy I have made significant progress which has been making medical history. I am down to 4 major medicines to help decrease inflammation, relax muscles and help breathing, in addition to using 2 electric heating pads every day to help loosen my muscles. I do advanced physical therapy where my frozen areas of muscle are released. the damaged spots of muscle along my right side are broken up using a specialized needling technique [see video]. This therapy is extremely painful, but it’s the only method that has helped heal my muscles and restore better movement and function.
This is an article that was written by a senior editor in NYC about my story and the extreme challenges I've had form many years getting properly diagnosed and treated with SPS in order to save my life and make a recovery possible. It reflects the severity of my situation and reality of risks I face every day since I haven't had enough supports and there isn't awareness in society about SPS or a medical foundation for assistance to help with many needed things that are critical to survive and heal properly and stay safe.
Thank you, Jim, for writing this article that explains the real truth in an accurate way that many people often don't understand since they have not had to deal with such difficult challenges of diagnosing and treating/curing a very rare crippling illness and creating a regimen to heal from it with the best medical team in the country. I appreciate the work you have done on this article, and that you will be featuring it in a newsletter from Patients Rising next week.
If people out there reading this could please share my story with other people who can help to raise awareness and donate to this page it would make a life saving difference during important times to get things I need to stay on track with my health and life to make more progress that is needed and achievable through the specialized treatments I have with my medical team In NYC. I need more supports to keep going since the medical costs are very expensive and there is no other way to heal and get my life back.
I have to go back to Mt Sinai hospital on the UES next week since they are the only people who know how to treat me safely and are being guided by my famous Rheumatologist in NYC who has been calling in recommendations from home to help manage my care the best way possible.
Please see if you can get a consultation with Anthony William, Medical Medium to find out what is really going on. Although there is a name to your disease, you still don't have the root CAUSE of the problem and how to treat it. Anthony William is extremely blessed and is spot on every time. Also consider reading his book, Medical Medium, The Secrets Behind Chronic and Mystery Illnesses and How to Finally Heal. It will change your life. My prayers are with you and I wish you a quick and speedy recovery with the strength to push through it all.
Many of your crippling symptoms are very similar to leg length discrepancy - also very difficult to find someone who can detect properly - thought to cause a chain reaction of muscle hypertonia, laying down of extra-fibrous muscle tissue - gradually limiting the range of motion, prolonged muscle hypertonious and hyper-reflexicity, interference with venous and lymphatic drainage, slow stiffening of the gait, inflammation and degeneration, changes in endocrine control, increase in muscle activity in the low and high para-spinal muscles with associated respiratory problems. Significant effects would be very rare if it required both an underlying genetic metabolic syndrome and an undiagnosed muscular skeletal disorder that causes asymmetric symptoms and environmental factors of intense and prolonged physical activity. The thing about leg length discrepancies is that you get to experience a miracle cure. I hope you find a miracle cure too.
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!
Anthony William, Medical Medium. He will give you guidance and help you!
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.