This is Steve’s treatment and recovery log. The Stanford imaging and surgery are scheduled for 9/28 and 9/29. I thought it appropriate to start with his MS symptoms and history. Please forgive me if some of the future entries are very dry and clinical.
About the man: Steve is 56, ½ Sicilian, ¼ Italian, 1/8 Irish, and 1/8 German. He was born and raised in Schenectady, NY, and he’s lived in the Dallas area for the past 25 years. Steve is a quiet man with a generous and loving heart. He’s very disciplined and loves the structure of a routine. It was tough for him when he was laid off in January, even though it was even tougher on him when he was working every day. His new routine is to come into town with me on Mondays, Wednesdays, and Fridays. On those days, he goes to 8 a.m. Mass, stays for the Rosary, hobnobs with the senior citizen “daily Massers,” sometimes goes to programs with them at the senior center, has joined a bible study, and runs errands. He comes to my office and takes naps in between these activities. On Tuesdays and Thursdays, he stays home to rest, cook, and do laundry and housework. Lots of time is spent napping every day. Since the lay-off, he filed for disability income and was approved as of July. He’d rather it were a paycheck for working, but he’s glad to have an income with his name attached.
About the MS: Steve was diagnosed in January 2005 with RRMS, a diagnosis that was later changed to SPMS in the summer of 2006. The truth is that Steve’s MS is OLD…45+ years old and I wonder sometimes if it isn’t actually PPMS.
Before Steve was 10, dyslexia and poor eye-hand coordination were his only common MS symptoms. Then at 10, he spent a week in the hospital with a suspected case of rheumatic fever, but there was no conclusive diagnosis. His symptoms were fever, fatigue, weakness (especially the legs), and malaise. If that was an MS attack, it’s the only one he’s ever had. The urinary urgency started in his late teens, and the occasional ED started in his early twenties.
For the next 20 years or so, there was just very slow worsening of his urogenital symptoms and lack of coordination. Other symptoms crept in too: feeling off-balance on rare occasions, nervous ticks, chronic constipation, mild fatigue, and allergies.
Then he met me. When we started dating, I had walking pneumonia and didn’t know it, just the latest of many serious respiratory infections. Now I know that it was the start of several years of constant communication of Chlamydia pneumoniae from me to him. Within a few months, Steve developed sciatic pain, restless legs, and the imbalance problem accelerated. Shortly after we married, I wondered if he had MS, because, as a child, I had known a man who had MS. It sure looked similar to what I had observed, but I put it out of my mind. Over the next few years, everything accelerated. When Steve’s boss asked him if he might have MS, I dragged him in to the internist with a long list of symptoms and asked “Does he have MS?” In the previous years, I had sent him to doctors with lists of symptoms, but nothing ever came of it. It took asking the question to get an answer.
After the diagnosis, Steve injected Rebif for a year and only got much worse. In 2006, I found the Vanderbilt Protocol, a long-term combined antibiotic regimen tailored to treat chronic infection with Chlamydia pneumoniae. We both tested positive for chronic infection. Steve is still on the protocol full-time, and I’m on intermittent therapy. The Vanderbilt Protocol has slowed Steve’s progression, but there has still been progression. I expect he will remain on the protocol at least several months after receiving stents for CCSVI.
So now, he has foot drop on the right side, a very weak and slow right leg that is wasting in the thigh, the left leg is getting weak, his balance is very bad almost all the time, he’s lost quite a bit of upper body mass and strength, he becomes paralyzed with too much heat or fever, he has poor dexterity, his vision gets blurrier as the day progresses, his speech is often slurred and he has trouble finding the right words, he has tinnitus that he says sounds like a machine shop, he wears absorbent briefs and pads all the time, he has no feeling in his body except his nose and his burning feet (both of which are hyper-sensitive), he’s very stiff when he has slept or sat for awhile, he has significant cognitive dysfunction, he has heavy salivation and sometimes has trouble swallowing, and he has to use Lunesta because of poor sleep. He walks badly for very short distances and uses the riding carts in stores. He has a cane, a walker and a wheelchair, all of which he uses occasionally. BUT, the very worst of all Steve’s symptoms is FATIGUE. And yes, he’s depressed.
I’m wondering seriously about how much good CCSVI treatment will do for someone who has had MS for such a long time, but we’re so looking forward to finding out. Since further information concerning people with progressive MS came to light at the conference in Bologna, we’re considering adding Copaxone to the drug mix to span those infernal 18 months needed for the whacked-out immune activity to stop. We’re both hoping Steve will get some of the same types of symptom relief that others have gotten, but all he has actually verbalized is that “it would be nice” if he had a return of feeling in what I refer to as “the center of his universe.” You men out there know what I mean.
Last edited by mormiles
on Tue Sep 22, 2009 1:13 pm, edited 2 times in total.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."