sheldonbrown.org/journal/health.html
Journal/Blog , but a major problem has been gradually developing over the course of about the last 3 years that can no longer be ignored, because it seems to be forcing a major change in lifestyle on me. I have developed a gradual nerve deterioration (motor neuropathy) in my legs, which is accompanied by muscular atrophy. The first symptoms were general clumsiness and a number of trips/falls. At first I thought this was related to balance issues, but it turns out to be more related to incoordination of my legs, particularly my right leg. Although the onset of this has been very gradual, it started getting noticeably more severe in the autumn of 2005. I was very grateful to have made it through the run of the Christmas Revels without falling down on stage. Since then the condition has worsened, and I'm now just barely able to walk without assistance. I'm no longer able to ride a bike, though I can still ride my Greenspeed trike, very slowly. Getting on and off and getting clipped in to the pedals is a bit of a challenge. I've been seeing an excellent neurologist since October, 2005 have had 11 MRIs, one CT scan and a needle EMG test. The description is "polyradiculoneuropathy", but the cause has still not been determined. Fortunately, the nerves involved are strictly "motor" nerves, so I am not in any actual pain or discomfort. October 25, 2006: The neurologist I've been seeing for the past years appears to be stumped, and he referred me to a different neurologist.
multiple sclerosis, of the fairly uncommon "primary-progressive" variety. May 3, 2006 More MRIs Two MRIs today, my pelvis and my right femur. A friend lent me a cool old walking stick that had belonged to her grandfather, I've started using this intermittently, seems to help. May 12, 2006 Tripped and fell this morning getting out of bed. The experience was predictably unpleasant, though not nearly so unpleasant (nor so long) as the EMG The surprising upshot is that draining the 6 vials of fluid seems to have actually made a noticeable improvement in my condition! I was actually able to climb stairs without using the handrail, and am generally less Klutzy with my feet than I have been recently! May 21, 2006 The benefit from the spinal tap has pretty well worn off by now, and I'm back to my previous stumbling status. May 31, 2006 Yesterday my neurologist gave me a scrip for a steroid, Prednisone 20 mg. I actually commuted on fixed gear today, first time I've been on a fixed gear this year. The right leg still feels a bit funny out of the saddle, and I don't think I'm ready for fixed gear climbing, but my commute is pretty flat, a bit over 3 miles round trip by the route I used today. After a week on the steroids, I'm definitely doing a lot better than I was before! I don't need the cane anymore, and can actually climb stairs without holding onto the hand rail again! I've also done several rides on fixed gear (no hills though) and I'm doing OK there. I'm better able to swing my leg over the saddle, and I'm doing better at getting my feet clipped into the pedals. The results from the Prednisone were pretty much immediate, can't say that I've noticed any continuous improvement as I go along, but I'm certainly functioning at a higher level than before. Before this, I was facing a steady decline with no sign of any hope of recovery. The worst was in February when I had pretty much convinced myself that I was in the early stages of ALS. The EMG test pretty much ruled that out, by determining that the problem was indeed localized to the legs. The steroids did help, but there has been no progress since the I started on them, and possible some deterioration, though I'm still doing better than before I started on them. Also got MRI #7, the noggin again, but this time with gadolinium for contrast... I did ride to work on the Quickbeam but it was a bit of a struggle, and I'm fortunate that I never had to stop for traffic on the way.
Dana-Douglas Nexus III Rollator Saw the neurologist again, the steroids don't seem to be doing as much as they were at first, or maybe I'm just getting used to a higher level of functioning. He told me to raise the dosage, alternating 20 mg with 40 mg every other day.
Measured responses to visual, audio stimulation, also electrial stimulation of wrists and ankles. Going back and forth from the parking lot, first time I've really used the rollator. It does seem to help, but going down the slope from the main entrance was still kinda scary. July 1, 2006 Had a first meeting with a physical therapist. She gave me some exercises for my hip flexor muscles, but those are also hte main muscles used for cycling, so I'm not convinvced that additional exercises there will help with the weakness in that area. She also put the fear of god into me about my flat feet, and I'm going to bite the bullet and get some orthotics and fancy sneakers, instead of living in my SPD sandals as I have been for the last few years. July 25, 2006 It's getting pretty difficult for me to keep cycling. On the weekend, I went on a CRW ride, but had to turn around after less than two miles because the hills were more than I could handle. Today, I rode to work on the Raleigh Twenty, at least the step-through frame makes it easier to mount. However I felt very unsteady stopping and starting, didn't feel up to riding home, so I got Sonny to give me a ride back. I'm getting pretty bummed out, but I'm hoping that the spinal tap scheduled for August 16 will bring good news. August 16, 2006 Went in for the lumbar puncture (spinal tap) in the morning. Initial pressure was 18 cm, final pressure after removal of 15-20 cc of fluid was 13 cm. I was able to walk much better, even to go up and down stairs without touching the handrail. In the afternoon I walked all the way around my block, even actually trotting a few steps on a couple of occasions. The effects of the lumbar puncture have pretty much worn off, and I'm back to about where I was before. Went for a 4 mile bike ride, but it was pretty exhausting. Feeling pretty tippy walking around, had a number of near falls saved by grabbing furniture or handy walls.
Greenspeed tricycle in the future unless my condition improves. September 6, 2006 My neurologist seems to have given up, he's referring me to a higher-level mucky muck neurologist, scheduling two more spine MRIs (upper and lower) and a bunch of additional blood work. He says people with NPH can't raise their toes as I can, thinks it could still be MS or Lyme Disease or maybe some other infection in the spinal column. September 16, 2006 Had the two MRIs, waiting for results if any. Currently scheduled to see new neurologist on October 25. October 19, 2006 Fell pretty hard face forward, tripped on a chair. Fortunately, I landed face first on the seat of a couch. Had trouble getting back up, had to wait for Harriet to get home to help me up. October 23, 2006 Another fall, this one backwards between the couch and loveseat in the living room. This time I was able to get back up by myself after a few tries, with the help of the furniture. October 25, 2006 Saw the new neurologist this morning, the news isn't good. His opinion is that my problem is MS, of the "primary-progressive" variety, and that the best I can hope for from treatment is to slow the decline, but that a reversal is not likely in the cards.
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