SummaryI have not chosen to bore people by whining about every ache and pain of my 62 year old body on my 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 haven't been able to ride a bike since early September, 2006 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 a 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.
The worst for me was February 2006, when I was very much afraid that it was ALS ("Lou Gehrig's Disease".) Fortunately, the needle EMG and the fact that the symptoms are confined to my legs seems to have pretty much eliminated that as a possibility.
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 neurologist#2. He told me that my problem is most likely multiple sclerosis, of the fairly uncommon "primary-progressive" variety.
A friend who is a retired MD referred me to neurologist #3, very highly recommended. He isn't convinced of the MS diagnosis, has me scheduled for more tests...
More MRIsTwo 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.
Tripped and fell this morning getting out of bed. May have bruised a rib, I'm kinda sore.
Went in to Mass General for a lumbar puncture (spinal tap.) Pressure was 19 cm, on the high end of the normal (8-20) range.
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!
The benefit from the spinal tap has pretty well worn off by now, and I'm back to my previous stumbling status. 19 mile bike ride was quite challenging but I made it in the end, slow as I was.
Yesterday my neurologist gave me a scrip for a steroid, Prednisone 20 mg. It seems to be helping!
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.
Saw my neurologist again. 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. Maybe there's "light at the end of the tunnel."
My morale is also much improved. 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.
Saw my neurologist again today. Going to slightly increase the steroid dosage. 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. For instance, if I concentrate, I'm able to climb up a flight of stairs without using the handrail...couldn't do that before.
Also got MRI #7, the noggin again, but this time with gadolinium for contrast...
Not doing so well today, kinda shaky. 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.
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.
I stopped off at Belmont Medical Supply and bought a rollator, a Dana-Douglas Nexus III . Looks like a pretty decent unit as these things go (though to a bike person, they all look pretty cheesy.)
Went in to Mass General in Boston for more nerve tests in the EEG lab. This is in hopes of ruling out MS as a diagnosis. 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.
Had a first meeting with a physical therapist. Not sure how much help this will be. 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.
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.
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.
Immediate relief! 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.
Well, it was nice while it lasted. 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.
Rode my Bianchi B.a.S.S. a little over 4 miles, but it was pretty scary starting and stopping.
My bicycle riding days may be over, I fear. I think I'll be sticking to the Greenspeed tricycle in the future unless my condition improves.
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.
Had the two MRIs, waiting for results if any. Currently scheduled to see neurologist #2 on October 25.
Fell pretty hard face forward, tripped on a chair. Fortunately, I landed face first on the seat of a couch. Bent my glasses a bit, otherwise OK.
Had trouble getting back up, had to wait for Harriet to get home to help me up.
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.
Saw neurologist #2 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. He is to phone me next week with either treatment options or a referral to an M.S. specialist.
I'm a bit disappointed with neurologist #2...he had said he would get back to me last week, but I have not yet heard from him.
Saw neurologist #3, this time at Beth Israel/Deaconess Hospital. He seems to think that the M.S. diagnosis isn't quite accurate, says there's "something fishy" and it's either something other than M.S., or somthing else in addition to M.S. He ordered lots of blood work (9 separate vials of blood!) and a new EMG test, which will happen in two weeks. Neurologist #3 is very highly recommended by a friend/customer who is a retired MD.
He said I should taper off on the Prednisone over a period of a couple of weeks. I need to get my medical records to him from MGH for review.
Took a nasty fall last night in my kitchen, struck my left shoulder hard on the corner of the pillar. Went in to MGH West to get it checked out. Xrays show no bone damage, but it hurts like the devil. Seems to be a rotator cuff issue, at least it feels like rotator cuff problems I've had in the past, except more severe.
I'm taking some strong anti-inflammatory (Dicoflenac) and have an appointment with an orthopedist for next Wednesday.
Finally got Neurologist #2 from Mass General to return my call. I saw him on October 25, he's the one who said I had M.S., and he was supposed to call me back the next week afrer reviewing the test results. He's a bit wishy-washy about the diagnosis now, says it's some sort of autoimmune disease, most likely a rare form of M.S. but he seems happy to pass the buck to neurologist #3 at Beth Israel. I'm going in there tomorrow morning for another needle EMG test. Not much looking forward to that.
Neurologist #3 says that one of the blood tests showed an anomalous reading for lactic acid, and that the EMG also showed some muscle issues, so he wants to schedule me for a muscle biopsy. I was in the car when he called and didn't get any more detail...
Discontinued the Prednisone, doesn't seem to be doing anything for me.
Met with the neurosurgeon to arrange the muscle biopsy. He plans to take a 2-3 inch strip from the deltoid muscle in my left arm. The actual surgery will be on Friday, the 15th.
Well, yesterday I went into Beth Israel for the biopsy. It was s'posed to be done under local plus "twilight" anaesthesia, but I guess I musta been too frisky, 'cause they wound up putting me out completely. I don't remember anything.
The incision on my upper arm isn't particularly painful, but my throat's really sore from where they stuck the tube down it.
I'm told it will likely be a week or 10 days before I get the results of the lab tests.
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