STIFF PERSON SYNDROME
~ ONE IN A MILLION ~
Here I am, one in a million! I told my husband that I was special but didn’t know how special. Sounds like fun but not so much. I am a 41 y/o female and was officially diagnosed with SPS at age 38. I can’t pinpoint the exact time when I experienced my first onset of SPS as I have suffered with pain for quite a few years. I have been involved in 9 automobile accidents, and don’t worry I was not the executor of the damages. I have been very active throughout my life and didn’t do things quite like a “Girl”. I was an active quad rider and I didn’t leave any Sand Dunes unturned. My Husband of 17 years introduced me to quading when we first met and couldn’t keep me away. I can’t say I was the most courageous but for a girl I could ride with the best of them. My profession prior to the onset was Project Manager (Field PM) for a Subcontractor and now I work in the office. I went from working 14 hours a day to 8 hours a day. It is a good thing that I am not working as hard but I find it hard to even work at capacity within that 8 hours. My husband and I counted 21 doctors that I had seen before we finally made some head way.
I suffered a pretty bad accident with my husband in a Sand Rail in 2006 thus starting the awareness of my disorder. I went to several doctors up and to this point attempting to alleviate my pain. Most of which thought I was searching for narcotics in lieu of finding the cause of the pain and fixing it. You see I am not the typical girl, I wear jeans, work in construction, have a couple tattoos and all of a sudden I am a “Druggy” when in search for pain relief (I am not a druggy but you know doctors). All of my pain started with spasms in almost every part of my body, sometimes lasting for days in one location. Lower, Mid, Upper Back pain, Neck pain that almost always lead to Migraines. Unexplained pain down my left leg, knee, and calf, and unexplained Vertigo that lasted for weeks at a time.
I ended up going to an esteemed spine surgeon to help alleviate the pain in my lower back, mid back, and neck. He ran tests, MRI, CAT Scans, etc. however the only fixable problem was a birth defect. I had several issues with discs from the auto accidents and Foraminal Narrowing in my low back (birth defect) which is what could be causing the pain. I underwent the surgery with 3 months recuperating, subsequent to the surgery, recovery, and the internal sutures dissolving ALL OF MY PAIN RETURNED WITH FRIENDS.
I was then referred to a neurologist. He ran an EMG as the first action, funny story. My Neuro is Latin and has a thick accent which made it difficult for me to understand, I was nervous, scared as I am sure all can understand. He started the test with me lying on my stomach and began testing the muscles in my thighs. He then slapped the back of my leg and told me sternly to relax. I almost laughed, “I am relaxed”, “Well for as much as I can be now!” He then referred me out for the blood work and that was that, I had SPS. He considered running the Spinal Tap during my back surgery however the surgeon declined due to the risks. At this point, both doctors agreed to not perform the Spinal Tap but had a positive between the blood work and EMG.
I started the IVIG right away. 5 shots, one a day for five days and one shot a month thereafter. I made it through the first 7 shots and felt like I was going to die so I went back to see the Neuro. Allergic reaction or injected too fast, we don’t know but this is what happened. Migraines, Pain, Chills, Blisters, Purple Bumps, Heart Rate Higher, Labored Breathing, Stiff Neck, Light Sensitivity, Extreme Weight Gain, Chest Pain, Swelling, Fever, Nausea, Diarrhea, Flu like symptoms, Unable to have Bowel Movements, Incontinence, and much more. My Neuro decided that the Risk now outweighed the Benefits. The reaction I suffered took almost a full year before I felt normal and my body to start working properly again. I have taken several falls and suffer constantly with ruptured muscles.
I am currently taking: Gabapentin, Baclofen, Tizanidine, Morphine Sulfate, Percocet, Sumatriptan, Zomig, Lidocaine Ointment, Lidoderm patches, Oxybutynin, Macrodantin, Vitamin D3 5000 IU 2 daily, and Vitamin B12 injections weekly. At this point, I am not receiving any treatment per say as neither the Neuro nor I know what step to take next. My mind and body are weak and I am not positive that I would make it through another ordeal like the IVIG. I have been searching for something, anything, please help this pain go away and get some of my life back.
I am a wife and mother of two: 21 y/o son who is off on his own and doing great being independent and a 16 y/o daughter who is a junior in High School and is such an amazing blessing to me. Last but most definitely not least, my spouse of 17 years who has stood by my side unwavering the entire time. I Thank God every day for each of them and for my mobility/ability. I am still working full time right now but weakening by the day. John, you may also use my name, address, phone, number, blood type…..as long as there is advancement with discovering how to stop the progression…..I would give you almost anything.
I know my story is long but maybe it will help someone as the other stories have helped me. I wish you the best of luck, John. Speaking with you and hearing your strength renewed my hope. God bless each of you and keep fighting.
One in a Million