One of the first things I heard when Thor came to me was what nice "tight" toes he had! I learned that his feet/toes should remain upright (not splayed) and that the way to ensure this "tightness" was to keep the nails cut short. I'm taking good care of the puppy toes.
And my toes: For several years I've had some purpling on the toes of my right foot. I showed them to my primary care physician who ordered a blood glucose test. When that came back normal, nothing more was done. I also showed them to my neurologist who didn't seem concerned. I interpreted his nonchalance to be that the toes were outside of his area of expertise; he was leaving it to my PCP. Because the purpling was limited to a few spots and was not worsening, I let it go without further ado.
On January 25, 2011, I saw a doctor at the Pain Center in Pittsfield for the first time. For years, I'd been living with peripheral neuropathy and low back pain. In addition to prescribing medication for pain, Dr Lambert sent me for physical therapy. After a fall, my right ankle had begun to hurt. Negative x-rays led to a diagnosis of a sprain. I began PT on January 31. At that point, I was falling an average of once a day (some days not at all, others up to 3 times/day). By my 3rd PT appointment on February 7, the therapist took a look at my left foot and said, "You need to see your doctor." The foot was a deep pink with dark purple on all but the big toe. Right foot was pink but nowhere near the appearance of the left. I arrived home around noon, called my PCP, and was given a 1:00 appointment.
PCP said he had never seen feet like mine. He commented multiple times on how very cold the left foot felt. He also found it hard to find pulses in the left foot and leg. Femoral pulse was weak with worsening weaknesses in lower pulses (knee, ankle, foot). After exam and discussion, MD ruled out diabetes, raynauds, and frostbite as causes. He made a tentative diagnosis of Peripheral Artery Occlusive Disease, prescribed blood pressure medication, and ordered vascular testing. Vascular testing was performed on February 14. Results showed diminished blood flow to 4 toes on the left and 3 on the right. A week later, involvement had spread to all toes.
I was interested in the vascular testing as I've always been intriqued by science. The technician put blood pressure cuffs on my thighs and calves and measured BP. Then pulse and oxigenation was recorded for each of my toes. When the technician left the room, I looked over at the graphs coming out of the machine. Although I didn't know what I was looking at, there were differences between the two feet which didn't look right to me. Test results (several days later) showed diminished blood flow to the 4 small toes on my left foot and toes 1-3 on my right.
Meanwhile, in January and February, I attended two dog agility clinics in Connecticut put on by Divine K-9, presented by Bobbie Bhambrie. I opted to take Glitter since I was walking with two forearm crutches; I thought it would be hard for me to handle Thor in unfamiliar setting with unfamiliar dogs; he would want to play! At both clinics, I was walking with forearm crutches (which I had been for ~8 months). By the 2nd one (Feb 19) I had to sit for a couple of exercises and skip another. Despite the modifications, I fell once during the 2nd clinic and needed assistance to get up. I was extremely impressed with Bobbie (who I had not previously met), her knowledge, her ability to get the very best from our dogs, and her adaptation of the exercises to meet my limitations. By the end of the first afternoon, we were doing restrained recalls through distractions.
Glitterbug's two goals in life are 1) to meet every stranger on the face of the planet and 2) to find every food treat she can. She will leave me/ignore me in pursuit of each of these goals. Needless to say, they have made agility competition with Glitter challenging at best! By the end of the first half-day seminar, I was able to call Glitter through two lines of people who were sitting on the floor; she also had to run over food treats scattered on the floor. On the first two attempts, Glitter snagged a treat or two. But on the third rep, she ran right to me; didn't even look at the people or treats. Miraculous!
The second clinic was "Superstar Seesaw," again with Bobbie Bhambree. Although Glitter has no seesaw issues (following a successful retraining), I knew that I was again in no shape to handle Thor away from home. So Glitter and I went, to learn and bring home lessons for Thor. It was another good workshop although I already knew most of the games we played. Still, a refresher is always good. Thorry is off to a good start after playing lots of tippy board/wobble/board/seesaw games; I now have the finishing touches to teach him a great full-height seesaw performance.
My drive home was nightmarish. I had been accompanied by two friends for the first seminar; they helped with map reading and companionship. I went alone to the second. I missed the exit to take route 8 north and ended up staying on I-84 all the way to Hartford. Then north of 91 to the Mass Pike. Almost from the start of the drive, my feet were in unbearable pain. The traffic was horrible, worse the closer to Hartford I got. So many cars, so much speed, I was scared. I kept saying to myself, "Don't cry, don't cry, don't cry." I knew I had to keep my vision clear or it would be all over. Somehow, I made it home in one piece.
That night, three of the toes on my left foot had taken on a grayish hue. By Sunday, they looked better, and I thought I could wait til Monday morning to check in with my PCP. Calling on Monday, I discovered that the office was closed; then I remembered that it was Presidents' Day, a holiday! Luckily, my own doctor was on call. We agreed that I should head over to the Emergency Room. Although the toe color had returned to pink and purple, after hearing about the greyness of Saturday night, the doctor was worried about the possibility of blood clots. He suggested that the ER should do a sonogram and possibly a CAT scan to look for clots. He told me to have the ER doctor call him to get my history and discuss my case.
Before going to the ER, I emailed Kathy at Sugar Bush Farm to find out if I could bring Thorry up to the farm in the event that I was hospitalized. She and Craig agreed to help if needed. If it came to that, Jeffrey could drive, using my van, to take Thorry to Stephentown. It would be easier to find a temporary home for Glitterbug so I didn't try to pre-arrange that for her, but I had a few possibilities in mind.
My son Jeffrey drove me to the ER. Feet and toes were dark pink with purple mottling of the toes. Again, pulses were weak and hard to find on the left side. Despite talking to my doctor, and my comments that the appearance of my feet did not fit with a diagnosis of Raynauds (which a sister and my father have), the ER doctor sent me home with an information sheet on Raynauds and instructions to follow-up with my PCP. No imaging of any kind was performed.
On Thursday of that week (Feb 24), I had a routine follow-up appointment scheduled with my neurologist, Dr Edwards, in Bennington, VT. I was able to walk (using two forearm crutches) across the parking lot and into the office. I told the nurse that my timed walk would be abnormally slow but that it was not MS-related; rather, the pain in my feet necessitated slowness. I also told her that I would like Dr Edwards to take a look at my feet. Dr Edwards verdict: "That's MS." He went on to say that he sees feet like mine every day. He wrote a note to my PCP telling him that my foot discoloration is due to MS! I was in shock. I've had MS for over 20 years (and done a lot of reading about it) and have never ever heard of vascular symptoms.
I saw my PCP the next day, wearing the fur-lined boots he's suggested I buy. He was relieved to have an answer handed to him saying, "This sure makes my job easier!" I felt relieved and hopeful that, with treatments for MS, my pain would diminish. Dr Edwards had ordered three days of IV Solumedrol to be delivered on March 1, 2, and 3. By this time, I could no longer drive at all nor walk from parking lot to office. I needed a wheelchair. On March 1, I wore my new boots although I needed Mom's help to put them on as my feet had started to swell. By the next day, I could get the right boot on but wore a sock and two plastic grocery bags on the left. And when Pam came to drive me on the 3rd, I was in plastic bags on both feet. Clearly, the solumedrol treatments were not having an immediate effect and, in fact, my feet were worsening. I've been wearing plastic bags every since. Before long, I began calling Dr Edwards office several times a week to see what the next step might be.
Dr Edwards had first mentioned Tysabri a couple of years ago but, at that time, he said I would have to go to Springfield to have it infused. Having been lost in Springfield a couple of times, I didn't like the idea of driving there monthly. Last fall, Dr Edwards had me on monthly Solumedrol infusions in this Bennington office. While there, I learned that someof his patients were getting Tysabri in that location. But when I asked about it, I was told that Medicare won't cover Tysabri in an office setting. In December, Dr Edwards told me that he was working on getting Bennington Hospital to be an approved infusion center and that I'd be able to start getting Tysabri there by the end of February. Turns out, Bennington Hospital never did get approved. In the meantime, Tysabri is no longer available in Springfield. Finally, Dr E decided to send me to UMass Memorial MS Center in Worcester. When they set up the initial appointment, it was for a consult, not treatment. I can understand that, but by this time I was feeling pretty impatient and enduring increasing amounts of pain. The pain had gravitated into my ankles and as a shooting pain up my left shin. I was doing all of the PT exercises I had been given along with "bicycling" on my back and leg lifts... all in an effort to get my blood moving and decrease pain... to no avail.
On March 30, Mom drove me to Worcester. I had high hopes for the appointment feeling that it represented my last chance for pain relief. It was the most thorough neurological exam I have ever had. I was surprised when told that my timed walk was significantly slower than it had been in Bennington in February. Exam showed bilateral weakness, mostly in legs and worse on the left side. This new doctor said that, while the swelling in feet could be MS related, and/or a result of my sedentary days, he was unfamiliar with any vascular effects due to MS. He felt that I probably have vascular disease separate and apart from my MS. He also felt that my MS has entered the secondary progressive phase of the disease which excludes me from receiving Tysabri. He said I might qualify to participate in a study on Tysabri and secondary progressive MS but that would be down the road. Also, except for Solumedrol, the current MS therapies (including Tysabri) are intended to delay further progression of the disease; they do not address or reverse current symptoms. So none of those will help with my pain. He suggested a consideration of one of several chemotherapies although the side effects of those are greater. He also suggested that, based on my history, symptoms, and exam, it is possible that I may have another autoimmune disease in addition to (or even instead of) MS. While all indications point to MS, he said it is highly unusual for MS to be unresponsive to Solumedrol. (I've had it probably a dozen times with never a favorable result.) He was also surprised by my temperature deregulation (night sweats/shivering) and frequent low-grade fevers. He ordered blood tests to rule in or out other diagnoses. (Eight vials of blood!) One of the additional possibilities mentioned was lupus. I forget the others. The doctor was very thorough, very empathic, very open. Overall, a good appointment. In addition to the bloodwork, he ordered an updated MRI scan and a follow-up appointment at the MS Center.
I now have two walkers, one bought by an agility friend, the other (finally) came from Medicare. Unfortunately, they are not much use to me. Weight on my feet is unbearable; additionally, a walker allows me to stand/walk less upright than I do with crutches, not a good thing given my longstanding low back pain, and increasing joint pain throughout by body. Two days ago, I placed an order for a wheelchair. I have been visited by a social worker from Elder Services for PCA services. (I am currently able to shower less than once a week; showering increases my pain, possibly due to a slight increase in body temperature). The agility community has held two fundraisers on my behalf to be used to build a HP ramp (if this winter ever ends!); the lumber is being donated by LP Adams, a local building supply store where another agility friend works. A few local agility angels have brought me groceries. One has been bringing tapes of "Everyone Loves Raymond" for me to enjoy. Jeffrey shovels snow, fetches mail, and has brought his dog over to play with (and tire out?) Thorry. Matthew has repaired my printer, DVD player, and replaced the (broken) doorknob on my back door with help(!) from Zackary. Mom, Pam, and Jen held a cleaning party here last weekend. I have begun looking into possible placements for Thorry. A social worker from Elder Services came to look at my need for PCA assistance; a nurse and occupational therapist will come out for further evaluation in about a week.
I have an appointment on April 6 at the Berkshire Vein Center. I need to get to the bottom of whatever is going on vascularly. I am in tears daily due to the pain. There have to be some better answers.