Summary

I 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 in coordination 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, two needle EMG tests, a nerve conduction test and a muscle biopsy. 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.

I really don't mean to be gloomy.

In most ways my life is a dream: after 27 years of marriage, my wife and I are still very much in love.

We've got two great kids, both of whom are doing well in graduate school and appear to be on track toward happy, productive, independent lives.

We live in a comfortable house in a safe neighborhood. I have work that I love and a kind, understanding boss who values my contribution, even though it only comes over the computer keyboard these days, sometimes at the shop, more often from my home.

My condition is a major inconvenience, but doesn't appear to be life-threatening, and there is no pain involved, so I really consider myself a very fortunate person in general.

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.

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 electrical 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 the main muscles used for cycling, so I'm not convinced 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.

Took another tumble this afternoon, landed on my butt, but grazed the top of my head on the edge of a table, making a bit of a bloody mess. I was home alone at the time, but fortunately this was on the second floor, so I was able to scoot over to the stairs and use the stairs to get back upright again.

Harriet came home not too long later and cleaned it up for me. Doesn't appear it will need any stitches...

By 9 pm the bleeding still hadn't stopped, so we went to the emergency room at Newton-Wellesley Hospital. Waited a while before seeing the triage nurse, and she found that the bleeding had stopped, so we went home.

Neurologist #3 finally returned my call with results from the muscle biopsy, which were negative.

He now thinks that it's arthritis in my neck, pinching a nerve. I asked him if that offered any hope of treatment/cure, and he said I needed to make an appointment to talk to him in person. I haven't yet been able to get that appointment scheduled, waiting to hear back from his receptionist.

I saw Neurologist #3 yesterday. He's suspecting that I have two separate conditions, a central one (which might be MS or something else) and a condition affecting my legs specifically.

The muscle biopsy was negative. It had been called for on the basis of the EMG test, but that test may have been confused by the Prednisone.

Anyway, he's going to try me on a course of IV Immunoglobulin. I'll be going in 5 consecutive days to get it pumped into my arm, we'll see if that helps. Dr. says if that doesn't work, he'll refer me to the B.I.'s top MS specialist...

Another fall, this time in the kitchen, mid afternoon, landed on my butt and back. No injury this time, just a bit shaken up. Harriet, Tova and George all pitched in to hoist me back upright again.

Intravenous immunoglobulin treatment. Went in to B.I. 5 days in a row, spent 3 1/2 - 5 hours each time getting IVIG pumped into me.

Hard to tell for sure, but it may have made a very slight improvement in coordination of my legs.

The nurses were really nice!

Spoke to Neurologist #3 about the IVIG treatment and its results, such as the are. He said I should give it another week, see if condition improves. If not, he's out of ideas, and will be referring me to Neurologist #4...

Still no actual diagnosis.

No improvement, more deterioration, running low on hope...

Neurologist #3 is going to schedule me for another lumbar puncture (spinal tap) see what that does.

I really don't mean to be gloomy.

In most ways my life is a dream: after 27 years of marriage, my wife and I are still very much in love.

We've got two great kids, both of whom are doing well in graduate school and appear to be on track toward happy, productive, independent lives.

We live in a comfortable house in a safe neighborhood. I have work that I love and a kind, understanding boss who values my contribution, even though it only comes over the computer keyboard these days, sometimes at the shop, more often from my home.

My condition is a major inconvenience, but doesn't appear to be life-threatening, and there is no pain involved, so I really consider myself a very fortunate person in general.

Well, I had lumbar puncture #3 yesterday, but this time it didn't seem to have any noticeable effect on my condition.

Lots of folks have urged me to try acupuncture, so today I went in to a highly regarded local acupuncturist. He listened to my tale, and was straight with me--said there really wasn't anything he could do for my condition. Maybe if I were to take a series of 10 treatments there might be a tiny bit of symptomatic relief, but maybe not. He did do a treatment anyway, stuck a bunch of needles in and had me lie on a table in a dimly lit room listening to new age music for half an hour. It was restful, the needles didn't hurt, but there was no noticeable benefit from the exercise either.

Went in this morning for the "EEG with Visual evoked potential." From what I read on the Web, this is a test related to MS. They had me watch a video monitor with a flashing B&W checkerboard pattern while measuring my brain's response to the flashing. This is to check if there's a delay in the response of the optic nerve.

I have not noticed any particular vision problems aside from my long-established astigmatism. Neurologist #3 expects the results of the test to be available late next week.

This was the first time I've actually used my new electric scooter, it was a big help getting from the parking lot to the lab at Beth Israel.

Got an email from Neurologist #3: I've got an appointment with th "MS doc" for June 7...

Actually got on a bike for the first time since last September! I took the Raleigh Twenty for a ride down Linwood Avenue as far as Woodrow Street, about a mile, round trip. Starting and stopping is very scary, but I'm going to try some more and see if I can get it to work for me. I really miss bicycling.

I carried my collapsible cane in a modified water bottle. The cane made it a lot easier to straddle the bike. To do so, I need to lean the bike way over, to be able to get my leg over the saddle. Turns out the step-through design of the Twenty doesn't give me a low enough step over to be of use.

For getting off the bike, I lay it flat on the ground, again using the cane to balance as I step over it.

At the halfway point I tried lowering the saddle a couple of inches. I'm not sure if that helps with starting/stopping or not, though it does make it easier to swing my leg over so I can straddle the bike.

Aside from starting/stopping, it felt really good to be on two wheels again!

Unfortunately, starting and stopping was really scary with even very light traffic. I think I'll stick to the trike for a while longer, try to build up more strength in my legs before trying two wheels again.

Took another fall today, this one while going down stairs at home. My right foot went out too far and missed the step it was aiming for. I landed on my (fortunately well-padded) rump and bumped down several steps to the bottom. No harm done except sore fingers on my right hand where I tried to hold myself by the chinning bar but didn't have a good enough grip. It was more scary than anything else, and fortunately I was more than halfway down the stairs when I fell.

I've long had a bit of a premonition of falling down those stairs from the second floor, where I need to pass by a fairly narrow area exiting my bedroom and crossing to the open library area where my iMac lives...

My first appointment with Neurologist #4

Neurologist #4 is an MS specialist. He seemed about as puzzled as #1-3, but did offer a couple of interesting alternatives:

Progressive Spastic Parapherisis . This is a genetic mutation, they actually know which gene, sometimes called the "spaston gene."

Argung against this diagnosis is the relatively fast progression of the condition. Two years ago I was basically fine, now I can just barely walk without a cane, and am at high risk for falling.

Another possibility is, of all things, a copper deficiency!

Bood was taken to test some of these things, and I'm scheduled for two more evoked response EEGs: Median and Tibial (Somatosensory.) This will involve administering electric shocks and measuring response speed. I think it has to do with confirming/ruling out MS. I go in for this test on June 22.

N#4 said there's no chance of improvement in my condition, the damage is done, even if they are able to cure the underlying cause and arrest my deterioration.

He also suggested that I try out a WalkAide . This is a high tech electronic gadget that would strap to my right leg, and it would detect the motion of my stride. It zaps one of the muscles to make the front of my right foot lift up as it swings forward, so it won't catch on the ground. (This has been a major cause of falls for me, so this could be a help, though it won't help the generally poor motor control.

I'm to be fitted for one of these next week, I'll give it a try for a while before committing...it's evidently quite expensive and not covered by insurance.

Tried out the WalkAide

It did help a little bit with the foot drop issue, but on the basis of a brief trial it's not at all clear that it is worth the $4500 to me to address this single symptom.

There's a possibility I might get to try one out for a few months as part of a clinical trial, and maybe more experience with it will convince me it's worth the price.

It definitely helps a bit in straight-ahead walking on a level surface. Doesn't noticeably help me on stairs or for turning, backing up.

Nashua River Rail Trail

I drove out to Ayer again to ride the rail trail on my Greenspeed. This time I rode the entire length of it, 25.41 miles round trip, my longest ride this year.

When I got back to the trailhead, I fell down trying to get into the toilet. Fortunately there was a group of cyclists there (a couple of 'em fans of my site!) and they were able to help me get back up on my feet again, also helped me put the trike back up onto the back of the Pontiac. I was weak enough from the ride that I'm not sure I could have done either without their assistance.

Trying to connect with an MS support group. Talked to a guy who runs one in Newton, but they're off for the summer. Won't be a meeting until early September.

Had another fall , walking from the kitchen into the living room carrying my dinner. Landed on my face, mainly my left cheek. Also got a cut lip.

Tasha got my dinner.

This was the first time recently I've taken a major fall while alone at home. I have been particularly concerned about that due to the question of how I could ever get myself upright again without assistance.

As it turns out, I was able to roll over onto my back, then wriggle across to the foot of the stairs. Then I was able to hoist myself up onto a step, then a second step, and to get back on my feet. The first attempt failed as my belt got hung up on the edge of the bottom step...I was afraid I would have had to phone a neighbor for assistance, but after a bit of a rest, the second attempt was successful.

Had a very scary near fall on the way from the car into the M.I.T. Student Center, going down a curb cut into a driveway my legs got away from me. I put out my cane to keep from falling forward, but started to fall a bit to the side. Jerked the cane up and over but too far, so I started to fall to the other side, wound up doing 3 or 4 cane plants before I managed to get stopped and, fortunately, still upright. It was very scary, and sent my heart rate through the roof due to the adrenaline.

Finally have an appointment for a followup with Neurologist #4 the MS specialist. I'll be seeing him on Thursday (8/16).

Several readers have encouraged me to pursue the Lyme Disease possibility by talking with a Lyme Disease specialist. I've been trying to make an appointment with one, finally got a call back and have an appointment to see one on September 18.

I've tested negative for Lyme on three occasions, but that test is notoriously inaccurate. My symptoms are not typical of either MS or Lyme, but seem to be more Lyme-like than MSesque.

Bought a second cane to match my blue one, this one for left-hand grip. I'm finding that walking with 2 canes is working a lot better for me. I've also ordered another folding cane to match the brown one I already have.

The blue canes have high-tech form-fitted hand grips, a lot easier on the hands, but sometimes I need the compactibility of the folding ones, especially when traveling on my trike.

Also, I usually keep the folding cane on the second floor, and the non-folding one on the first floor. The canes are not any help on the stairs, and actually interfere with getting a good grip on the banister, so it's easiest to have one on each floor...or, soon, two on each floor.

Another fall. This was a first: I was just standing, leaning on my cane, talking to Harriet and suddenly my left knee folded up and I toppled over backward. I banged my head on the base of the doll house, but didn't break the skin.

I've had knee collapses before, but have always been able to recover before totally losing my balance. This was super fast. It is also the first time I've fallen while standing still, which is rather alarming...hope it doesn't become a habit!

Diagnosis at Last!

Saw neurologist #4 (MS specialist) today, he confirms a pretty solid dianosis of Primary Progressive MS.

The good news is that this type of MS is very unlikely to spread ot my upper body, so I don't need to worry about mental imparement or loss of the ability to communicate.

Had a very scary fall today. I had parked just in front of M.I.T. and walked around to the back of the van, about to open the tailgate and haul out the scooter, when I toppled over. My head was inches from the sharp corner of the granite curbstone, which would almost certainly have cracked my skull...but my quick-thinking daughter got her hand out and caught my head just a couple of inches from the stone, so the only injury was to my calm and dignity (plus a little scrape on the forearm.) I'm sure glad Tova was there!

Finally connected with an MS-literate physical therapist. The meeting went well. Might get baclofen or something similar for the spasticity in my legs. This could help my walking, though it evidently has a side effect of reducing energy levels. Anyway, it sounds as if it's worth a try. She's going to contact Neurologist #4 about gettin a prescription for me.

I'm going to be going in two days a week for therapy for a while, starting next week. She also suggested a possible yoga class at the local JCC that is geared to MS patients, I'm going to look into that...

Baclofen

I started on Baclofen today. This is a drug for the treatment of spasticity, but one that may have undesirable side effects: weakness, loss of energy.

I'm starting on 5 mg 3 times a day, and I'm to up the dose to 10 x 3 in a week if no problems result.

So far it does seem to be helping a bit. I was actually able to cross my legs without needing to use my hands to lift the leg up over the opposite knee!

No side effects noticed so far.

Had another fall, just before bedtime. Tripped on the base of the stairs, and landed on my right side. Fortunately, it was a carpeted wood floor so it didn't hurt too much, though my right shoulder is a bit sore, as is my right hip. This is the first time I've fallen since September 1st. This is, I believe, because I've become super careful walking, and almost always have either two canes or one cane and a secure handhold on a wall, door frame, or solid piece of furniture.

Saw Dr. A. about my sore shoulder. I banged it a month ago in a fall, think I hurt the rotator cuff. I put a lot of weight on my right arm using the cane, and it hasn't been getting better. He scheduled me for an MRI of the shoulder next week.

Coming home I slipped in the snow on the landing of the front steps and got painfully stuck in a semi-kneeling position with my left foot being twisted very hard outward. I yelled loudly for help, and fortunately my next-door neighbor came to my assistance and helped me get back up onto my feet.

Had another fall this evening, upstairs in my study. I tripped on the edge of the rug, but was able to use a cardboard box to break my fall, so I was not injured...though my adrenaline level certainly spiked!

Went for an MRI this evening on my right shoulder. It's been pretty sore since my a fall last month , partly from the fall, partly from the load I put on it when walking with a cane.

Got a letter from my primary care doc, seems the MRI shows a tear in my rotator cuff. I'll need to see an orthopedist, I'll call on Monday for an appointment. I guess that fall was worse than I thought at the time.

Saw the orthopedist, he suggested that surgery was the best option. At the time this seemed like a reasonable option, but he referred me to this document about the recovery process which has rather freaked me out.

It looks as if this would cause me to be bedridden for several weeks, as I'm unable to get out of bed without using both arms, and I'm also unable to walk without using both arms for canes or crutches.

Looks like I would need to get a power wheelchair just to get around the house while recuperating, and even so I would be housebound since there are 9 steps to get out the front door.

Maybe I'll just have to live with it. I am trying to get another appointment to discuss non-surgical options.

My right ankle has been giving me a lot of trouble for the past week or so. It's fine sitting down, but when I put weight on it there's a really sharp, unbearable pain. I can't get around with the canes with this condition, I need to use either my crutches or my rollator.

I had a bout of this a few months back but it went away after a while. Hope it does so again this time.