MY STORY OF LIFE WTH SPS
It needs to be noted that I have Coronary Artery disease (open heart surgery in 1993), a second autoimmune disease called CIDP (Chronic Inflammatory Demyelinating Poly neuropathy), severe Sleep Apnea, Silent Seizures, (strange- will explain later), Diabetes, Type 2 (diagnosed in early 2006), and a few minor problems not worth mentioning. Because SMS has some symptoms in common with CIDP it is hard to determine when I first had signs of SMS.
Around 1995 or 96, I noticed sharp pains in my ankles. For 6 years it grew worse and no doctor could find the problem. Around 2000 the stabbing pains and electrical shock-type pains had spread to my feet and hands. My PCP sent me to a Podiatrist, who sent me for nerve conductivity tests. He sent me to a neurologist and the neurologist started testing me, including enough blood work to sustain a blood bank for a month. It was determined I had severe CIDP
. One morning, a month later, my wife touched me to wake me up and I immediately became stiff as a board. My muscles began to contract and I thought I was being pulled apart. I couldn't talk and breathing was labored. We both thought I was dying from a heart attack or CIDP. It let go just as quickly as it started. I was totally exhausted and frightened by the experience.
I told my neurologist about the incident, and more that followed. MORE testing and blood work. He said the results indicated that I had developed Stiff Person Syndrome, another autoimmune disease even more rare than CIDP. He had other SMS patients and specialized in CIDP. He started me on IVIG treatments, 5 days every 4 weeks. At this point IVIG was only slowing the progress of both diseases. Diazepam was added, as the SPS got worse. Over the next 3-4 years, I deteriorated to the point where 2 doctors told me I would die shortly. Between two months to two years at best were the exact words they told my wife and I. Hospital visits for heart problems, bronchitis, pneumonia, falls from SPS and CIDP. I could not walk from my bedroom to the kitchen. No feeling in my feet (no diabetes yet) up to my knees. No feeling in my hands to above my wrists, yet unbearable pain inside my limbs. I was having SPS attacks (my description since then hit me like a sneak attack) lasting 30 minutes or more and dislocating my joints. IVIG was not working well, 50 mg of diazepam a day, and all the narcotic pain medication I wanted for pain (I took very little) was not slowing the deterioration. We began to make funeral arrangements so my wife would not have to when death came.
During all this my wife developed Acute Chronic Panceratitis, a very painful and debilitating disease. She was in and out of the hospital also. Sometimes we were in the hospital at the same time. One morning I tried to wake her for a doctor’s appointment. She had passed away in her sleep. No warning of death being eminent. Cause of death was the panceratitis. I thought this was surely the end for me also. She was my best friend and life without her was more than I wanted to think about.
Just before her passing, I stopped the IVIG treatments. They were not working and my insurance ran out. I had no more options. She was being treated for pain with acupuncture and her acupuncturist said he thought he might be able to help me. With nothing to lose at this point, I started treatments 2 days a week. Shortly the deterioration stopped, and VERY slowly over the next 3 years I began to improve. Today I take treatments 3 days a week (1/2 hour a day).
After 3 years of starting acupuncture, I was taking no diazepam, no pain medication, and my pain level is bearable. I have feeling down to my ankles (still none below my ankles), and my hands are usable again (still painful and lacking full feeling). I go shopping alone and I do not need the electric cart to ride in (a struggle at first) in small stores. I still need the electrical cart in larger stores, like Sam’s Club. I use a cane to walk with. Walking is still difficult because of balance issues, but improving each month. I still use it in stores, crowds, or unfamiliar terrain.
I must tell you that neither my wife nor myself ever gave up hope, In fact just the opposite. We were very pro active in the treatment of our diseases. Most of all we believed God would see us through it all and have his perfect will in our lives. As is the case many times His plans were different than our plans. I feel I have a long way to go, but I have come a long way with HIS help.
I still see my neurologist. He encourages me to stay on acupuncture and is amazed, as are my other doctors, at my progress. My acupuncturist is highly skilled. He was trained in Chine, is currently the President of a college that teaches acupuncture to young students, nurses, and doctors. He does not think like the average acupuncturist. He had never seen SPS or CIDP before and told me we would have to approach these illnesses from a way different than traditional acupuncture. There was no chart showing where to place needles for these unknown illnesses. I don't know if acupuncture would work for anyone else and I would not recommend stopping any current treatment to start acupuncture. If you start acupuncture, do so in conjunction with current treatments.
About 10 months ago the CIDP was showing signs of getting worse. The Stiff Person was and is still doing well, but I now take a small amount of Diazepam before going to bed to help prevent spasms in the morning. Because of the continuing CIDP deterioration and the fact that a new IVIG drug was just FDA approved for CIDP, I have started IVIG treatments again. I started with two treatments at 5 days each with 4 weeks between. Then 2 days as a maintenance dosage with 4 weeks between. It has really helped the CIDP symptoms.
My prayer is for all of you to see your journey through SPS with the knowledge that there is hope for all. Stay the course, keep the faith, and fight on.
God bless you all,
FAITH IS NOT THINKING GOD CAN; BUT THAT GOD WILL