My name is Jennifer and I have Stiff Person Syndrome (SPS), a disease so rare that it affects less than one person per million.  My “odd” neurological journey began shortly after my 40th birthday.  Excruciating pain and stiffness; numbness; tremors and an exaggerated startle reflex were just a few of my symptoms. Deep down, I knew that something was destroying my body, despite being told by physicians they “could not find anything medically wrong with me.”

Although my journey of cycling through 9 neurologists seemed like a lifetime, I am fortunate because I was diagnosed in less than 2 years at the age of 42. It takes most SPS-ers 7 to 12 years to be diagnosed. Confirmation of my SPS diagnosis was made by Dr. Joseph Jankovic, one of the nation’s top neurologists, at Baylor College of Medicine in Houston, Texas.

SPS is an extremely rare, progressive disease of the central nervous system and typically develops in the spine and lower extremities. Most patients with SPS experience severe muscle stiffness and painful episodic muscle spasms that are triggered by sudden stimuli. An autoimmune component is typical of SPS. No surprise, I have also had type 1 diabetes for 33 years and been on the insulin pump for 28 years. I take numerous oral medications daily to manage SPS and am also on Intravenous Immunoglobulin (IvIg) for 2 consecutive days every 3 weeks to slow the progression of this phantom illness.

I am now 45 and although SPS causes daily pain, stiffness and has slowed me down, I continue to fight the good fight with faith, family, a close circle of friends and my career as an interior decorator – which I love!  One such friend is my mentor and hero because she has been living with SPS for more than 20 years. She also lives in town, is a phone call away, and we get together whenever possible to exchange stories of our personal journeys with SPS. I’ve learned to live one minute at a time and to focus on what really matters because life is short.  My Christmas wish is to raise awareness for Stiff Person Syndrome especially throughout the medical community so that patients are recognized, respected, diagnosed and treated sooner.

24 thoughts on “My Name is Jennifer and I Have Stiff Person Syndrome (SPS)”

  1. Barbara Bradbury says:

    What bravery!

  2. Missy Foy says:

    Hi Jennifer,
    I have been diagnosed with SPs about 3 months ago, but my neurologist (and the rest of my medical team) think I have had it developing since at least 2009. I was a professional runner, earning a full-time living as a member of a national women’s team for a dozen or so years, going to Olympic Trials, getting national and world rankings … it was a really special and incredible life to live for all those years. I retired from the pro road circuit well before being diagnosed, but had already had “episodes” happen that would prevent me from being able to function at optimal level. I’m so thankful that I had already turned in my official retirement to the US Olympic Committee before this diagnosis, but it is still devastating, especially with how quickly it has progressed in the past 18 months or so. The painful episodes are impossible to describe to anyone. I have gone from looking normal to not being able to make it to the bathroom without crutches and hydromorphone in less than 24 hours. And, this is after I’ve been able to win 50 mile races less than two years ago. It has totally disrupted my life and the life of my entire family. No matter how hard I try, I cannot function sometimes. Period. I also have Type 1 diabetes, thyroiditis, asthma (the reactive airway disease type), and other allergies, probably some immune problems with some of my gut tissue as well, but that is a different story, although related. I don’t know exactly what I mean to say here except that this is the first time that I have really said to someone that yes, I have SPS and it’s not a mistake or something temporary, or a rare infection that will go away, or, or, or …. I seem to have an episodic nature to my SPS, where I have periods that it gets much better, but I have had about a month of pure hell and have not been able to run or do much activity except the elliptical machine. I made the mistake of making some decision on my own to change the medical regimen that my doctor put me on (there were a lot of reason that fed into that, too many to mention here) and I think that is why I have now had about a month of the worst episode yet. I am back on the regimen I was supposed to be on and hope that it will begin to improve now. Again, I don’t know exactly what I had to say, if anything in particular, except that yes I have SPS and it is really devastating for me. Missy Foy

  3. Ellen says:

    I have had the most horrendous pains in my back and neck, starting 4 years ago, the pain has progressively got worse. I dont seem to be getting very much support through my gp or my neurologist. Althought scans have been taken of my back, neck and brain there are no signs of what is causing the problem. Does anyone hane any advice they could give me as to what to do next? My neurologist is now sending me to cambridge (i live in uk) for tests for SPS, but it all just seems like a long waiting game, in the meantime I am suffering with also having to care for a 4 year old and an 18 month old. My family are extremely helpful but they need to live their own lives not be there for me when I am having bad days. I am currently taking slow release morphine twice a day, pregabaline twice a day and amitriptyline every evening. I also have 2mg diazepam I can take when needed. When I left my consultants office friday he said to try to come off the mst, but did not advise me what else could help me with the lain if it is Sps or even if its not just to help my pain.
    I hope someone on here can help. Getting abit fed up of accepting what they say as I feel wuite intimidated by them as they are the experts after all.

  4. Lawrence Gillis says:

    Hello I think it would be great if the medical community would do more study and help for chronic pain.With SPS we have a lot of it! I would also really like to talk to my fellow SPS, suffers around the world to see what helps them and what different meds are out there. I’m from Canada. I admire the courage of People like Jennifer and others who battle this disease. Enjoy Life it’s way to fast and short to waste.

  5. Rachel Cotton says:

    Kudos to you Jennifer! I’ve only been diagnosed for 1 1/2 years and finding articles like this inspire me so much. Everyday is a struggle and as a 35 year-old mom of two young children giving up is not an option. Thank you for writing this and shedding light on this monstrous disease. Wishing you blessings and strength to keep on fighting dear warrior!

  6. Linda Adriano says:

    Hi Jennifer, I was finally diagnosed with SPS in 2002, at age 46, by my neurologist. He read a journal article about SPS and recognized the symptoms as mine. He had me tested and sure enough he found out the mystery. He put me on Valium & Baclofen. My symptoms progressively worsened, just as NIH & NORD state. I was using a walker in June 2005 when at work I was startled & fell, fracturing my skull. Next started painful torso spasms that also involved my legs. I’ve had IVIG and Plasmapheris which didn’t have lasting results. My doctor had suggested a Baclofen Pump. I had it implanted in 2013 and my painful spasms have decreased substantially. I currently use a wheelchair in the house and a scooter to go out. Next step, working on getting my right leg (bent 60 degrees) to straighten so I can you a walker again. Perseverance and a positive attitude keep me going.

  7. Travis J Ruiall says:

    Hi, i to have just been diagnosed with sps, it took almost 20 yrs of spasms,cramps,tremors,nerve pain joint pain, it finally got to the point of full body spasticity with truncle dystonia, over a dozen neuro drs and over a dozen different diagnosis with nothing but pain meds. until dr. Ilcan cokgar realized i had stiff person syndrome and started me on Baclofen 20mg and carbolevodopa 50/200 a week later a could walk again without excruciating pain in nerve muscle and joint. . Unfortunately i can feel myself getting stiffer and more painful as time goes by but at least she got me some more time in my feet.. inthrecal Baclofen pump coming soon..

  8. Norma Currah says:

    Lawrence where do you live in Canada, I am also from Canada and was diagnosed in March

  9. Norma Currah says:

    I was diagnosed in March, before that
    I was falling about 4 or 5 times a year, tripping over my toes, and falling flat on my face, but not putting my hands out to stop myself.
    This was happening for about 3 years. I was seeing a Neurologist for about 2 years but he could not figure out what was wrong with me. In March my legs went stiff and I could not walk, I went to see a specialist and was diagnosed. From March until now, symptoms have not gotten much worse except that I sometimes have spasms. I was given 6 treatments of plasmaphurus but it did not help. Waiting to see what specialist wants to try next

  10. Luci says:

    Hi Jennifer. I am so sorry for all of you who are young (I’m 64, so I think of anyone as younger) and have to live with this horrible syndrome. I too have just been diagnosed, after 4 years of seeing different specialists. I’ve also had two types of rare cancers, one a carcinoid, and the other breast cancer, which I recently had surgery for. The neuro believes that my SPS may have a paraneoplastic association. I have been hospitalized 3 times now because I was in such horrible pain and could not even do more than blink my eyes. I am only taking diazepam right now, but we are looking at other options. I have been a marathon runner, an ice skater and bicyclist, but now I can only hit the pool at my gym, but at least I can move pretty freely in the water. My friends tell me to stay strong, but sometimes that is easier said than done, as you know. I have read of one person who has had a stem cell transplant with SPS and completely cured.

  11. Aidan Walsh says:

    Sorry to read your Story Missy you mention a few things like Alergies have you ever been tested for (HFI) hereditary fructose intolerance? It is not an Alergy but a missing enzyme & Fruit Fructose Sucrose Sugar Sorbitol some even lactose should be eliminated for like Glucose/Dextrose powder is safe. Also people think Gluten but likelty the Sugar added & yes in countless Medicines even Hospital procedures like cleansing agent for Colonoscopy not safe. do not do the (FI) fructose intolerance test it is dangerous with (HFI)I am not yet diagnosed but feel very much I have this illness I hope soon to run a blood test at a Private lab for (SPS) in the UK. I have had countless diagnosis which I believe are false, if you ever wanna touch base I am on Facebook under Aidan Walsh the Gold Angel is my logo photo in Southampton UK I am also from Montreal Quebec & will go back hopefully in 2018 I wish you wellness soon & a big fat Cure hugs blesses Love xx Merry Christmas to you & everyone here

  12. Donald F Kenly III says:

    Hi Jennifer, I was diagnosed with the same disease at the age of 26. I’m glad that you were able to find a passion and r still able to comtinue interior decorating. I was a cashier and still feel like I haven’t been, or won’t be able to find a passion, although I have a few hobbies, such as quilting, that I dabble with on good days. I’m age 28 now, was diagnosed with type 1 diabetes at age 10, take fourty mg of valium, 60 mg, of baclofen and also receive monthly IVIG treatments. I have experienced many of the same symptoms and experiences that you have described. The main things that irritate my SPS are the sensation of touch, stress, anxiety, moving the wrong way, and overuse of my muscles. I hope you don’t mind me asking, but is there anything that u are doing that I have not mentioned to keep your body relaxed? Also when you have an episode of spasming or stiffness what do u do to get yourself through it? Two things that I have done is deep breathing, and taking benadryl once I have finished consuming my allowed amount of daily meds. I don’t know anybody else with SPS, so any advice, support, relatable experiences, or additional information you have wouldbe very valuable to me and others who have SPS.

  13. Caroline Bader says:

    Hi I have been tested for this. Could you tell me how long the blood test took. I am being tested for other things. I have had spasms in my neck so already on Baclofen etc . But still this happens to me.
    It happens to me only on waking but it actually wakes me the intolerable pain & stiffness.
    I am sweating profusely burning hot.
    I have to sleep with my phone in my pillowcase & my hand by it. So I can summon help.
    My elderly Mum has to rescue me.
    I am using small amounts of Oramorph when it happens which my Mum helps give me. It can then take ages to very gently move me. Until I am upright.
    I am having quite a few investigations.
    But pleased to have found this. As unfortunately sounds a possibility.

    Have any of you been found to have a black spot on your globus Pallidus (part of of the basal ganglia) on MRI/MRA.
    Thank you.
    Thank you also Jennifer for writting the above piece.

  14. Norma Currah says:

    I have tried plasmapheresis and IVIG but neither worked, right now am trying botox injections
    Baclofen quit working and I have very limited mobility right now, hope the boxtox works

  15. Susan says:

    I don’t know that I have SPS – my symptoms are a bit different. I’m nearly 70 & was diagnosed with fibromyalgia in the early 1980s. It started in my mid-spine and 6 months later, my legs were like dead weights. I managed to work with extreme fatigue for 5 years (meds included low-dose anti-depressants for stage 4 sleep, anti-inflammatories, and muscle relaxers). Never diagnosed with CFS, as dr thought it was quack disease. Eventually, I got better & off drugs, though still had low-energy. Always, overdoing exercise makes me feel as if I have the flu. Legs tire – I asked for a wheelchair at the airport when traveling to/from London from NC back in 2001 (just to preserve legs for walking while touring for a week). Three years ago, while doing my 30 min walk, I fell flat & broke 2 bones – did not trip. No idea why I fell. I also have difficulty with R leg & hip going up stairs -very weak, so I did pool exercises. Overdid the exercises (felt great in the pool, though) & suffered from chronic hip bursitis for 2 years. X-rays show no arthritis in hips and not that much in knees. I noticed 2 years ago that my legs became very tired if I walked for 20 minutes. They eventually stiffened and I couldn’t take but the smallest of steps. Used a cane so I wouldn’t fall over. Bought a mobility scooter, as I didn’t know from day-to-day if my legs would function. During the very cold winter last year I stayed in, as I don’t work. I soon realized if I get 8-10 hours of sleep, my legs function well as long as I don’t overdo it. However, when I lack that much sleep or go,for a couple days with say, just 6-7 hours of sleep per night, my legs and entire body will suddenly – during the day or evening – rapidly stiffen. I become like a piece of cardboard and cannot function. My feet take baby steps – people immediately see I’m like a walking stiff board and ask “what’s wrong?” I have to sit and lie down – the stiffness will resolve with lots of sleep. Last night I had one of these episodes around 10 pm – I wasn’t sleepy or tired – but suddenly felt muscles in feet stiffen, then legs and rest of body. Struggled to get in the bed. This time, though, I had chest pain and back pain around the left kidney – making me wonder if Imwas becoming stiff internally, including organs. I have not collapsed, except on to a chair or bed, so don’t know if I would should I not be able to sit or lie down. This morning, my legs functioned normally, but I’ve stayed in and slept much of the day. So, yes I have episodes where my body dramatically and quickly stiffens – always when I overdo walking or haven’t had 8-10 hours sleep (ten hours is better…I have a hard time waking up). Could this be a variation of SPS? I live about an hour from Johns Hopkins, where there’s an SPS clinic & dr whomstudies this. Thanks!

  16. Debbie says:

    Hi I have an uncle in London, UK who has been diagnosed with the stiff person disease. There is not a lot of information about this disease and he gets very depressed at time. I’m trying to find a support group or activities with persons who have the same disease so that they can share with him and give him encouragement. Do you know of any such support group that near to him? thanks

  17. Ruth Pontiflet says:

    My sister was recently diagnosed with SPS and I have been searching for clues and input from others with SPS. Her condition is overwhelmingly critical with most, if not all, of SPS symptoms. thanks to all of you for posting your stories and comments…

  18. Ruth Pontiflet says:

    Hello everyone…. My sister (age 65) was diagnosed with SPS about 4 months ago. She tried IVIG which did work only made her symptoms worse.
    I am happy to report that my sister has gotten some relief (no cure) from SPS symptoms. She was given 5 treatments of plasmapheresis (one every other day) after a severe episode of spasms, cramps, jerks, etc.. She continue on medications of Diazepam, Baclofen, Kappra, and Gabapentin. So far she is doing much much better. She is doing physical therapy to help gain strength in her legs and her team of doctors believes that she will eventually be able to walk without any aids or assistance. I believe that this disorder has been developing in my sister for well over 10 years and became full blown after a second hip replacement surgery (the first was recalled). She says that deep breathing and benedryl has provided some control over the spasms.
    Thanks to all who posts your stories here. Your stories are really appreciated because you are all warriors in the fight against this horrendous disorder. Please keep posting your stories, medications and treatments you have tried. Thank you… Ruth

  19. Cheryl Prescott says:

    OMG! Where do I even start! I have MANY of the symptoms of SPS. The worst of my symptoms started about 6 months ago. I have almost constant horrendous pain from the whole torso, inner thighs, top of thighs (all of this pain is mostly in in the right leg) knees, shins, ankles, feet groin,(which is the worst pain) and toes! So, from TORSO-TOES! There might be 1-2 days with tolerable pain. My pain feels like BURNING, BEE STINGING OVER AND OVER, THROBBING, PINCHING ETC. I have my first Neurologist appt coming up soon. What will happen if I can’t make my appt due to excruciating pain? They require 48 hours notice of cancellation. I don’t know from one day to the next how I’m going to feel. Will I have to pay the fee if I don’t cancel in time? In the 80s, my mom suffered from similar pain, but I don’t think SPS had a lot of info on this disease. She went to many neurologists and other specialists, to no avail. She was told that she DEFINATELY DID NOT HAVE SPS. I believe she just gave up and got hooked on assorted medications. About 8 years ago she abused her meds, ended up going to a Nursing Home for an evaluation and ended up staying in the Nursing Home to this day! She will be 88 in July. If only someone controlled and doled out her meds, she would be home with me! She IS doing very well, no health issues except for the fact she became bedridden and her legs don’t work anymore! She’s ok, and very content. THANK GOD! So, I’m not sure what’s going on with my body. Primary care doctor says it’s FIBROMYALGIA, ARTHRITIS, AND DIABETES. He says that my future BARIATRIC SURGERY will help with most of my issues. It should, as I’m 100 lbs. overweight.(OBESE!) Right now I’m having severe pain in my right groin and inner thigh! I feel like crying! (Had a TOTAL RIGHT HIP REPLACEMENT) 8 years ago. Could that have anything to do with my pain? I’m so confused? Thank you for letting me vent (A BOOK!). LOL! Any info or insight on my problem would be deeply appreciated. I sure hope I’m doing all this right, with pain it isn’t easy! Reading other comments is really helpful. Thanx everyone. Also, is there a foundation for SPS? Sorry for everyone’s pain. MAY GOD BE WITH US ALL AND EASE US OF THIS PAIN. Is there any other way to contact me, as my E-MAIL doesn’t work right?

  20. Jonathan Lipscomb says:

    Thanks for sharing Jennifer. I was diagnosed with a similar autoimmune condition about a year ago and I’m 41. My favorite part of your story…”I continue to fight the good fight with faith, family, a close circle of friends “.
    So true. Please share any support groups.

  21. Mark Taylor says:

    Thanks for sharing your story and experience Jennifer, it really helps to know that you’re not alone.

    I am 44yrs old and have just been diagnosed with SPS. I was only 10 months ago diagnosed with Type 1 diabetes so it’s been particularly difficult and a lot to deal. Before being diagnosed I too lead a fairly active lifestyle and enjoyed cycling, my home gym and 5km park runs.

    My neurologist has recommended that I go for Plasmapheresis ASAP, given the severity of my spasms.

    I too will continue to fight the good fight with the love and support of my amazing family, close friends, excellent doctors, and faith in God.

  22. Tara Zier says:

    Jennifer, could you please pm me on Facebook or email me? I was on the air last month raising awareness and I am on a mission to keep the ball rolling.

  23. I have stiff person syndrome I also have hypothyroidism Hashimoto Vitiligo dysphasia.my doctor never told me my thyroid was low all my labs came back abnormal. Kaiser’s attorney told me they don’t treat thyroid until it gets to 10. Mine got up to 23.43 before another doctor treated me by then I already had theses illness

  24. Ana says:

    My name is Ana, like Jennifer I have diabetes 1 and seizure disorder. It is very sad that I saw over 25 doctors before being diagnosed with Stiff Person Syndrome. Now, finally have a neuromuscular doctor who’s helping me. Medicine and IVIG and keeping my faith someday I will not need a walker and could live pain free.

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