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 has forced 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/spasticity. 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 verrrry 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 neurologists since October, 2005 (I'm currently on neurologist #4.) I have had 11 MRIs, one CT scan, two needle EMG tests, a nerve conduction test, several different evoked response EEGs, three lumbar punctures (spinal taps), 3 Lyme Disease tests, and a muscle biopsy.
I've been treated with Prednisone (steroid) and IV immunoglobulin. The Prednisone helped a bit, for a while. The immunoglobulin did nothing for me.
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 see to have pretty much eliminated that as a possibility.
I finally got a fairly definitive diagnosis in August of 2007. My problem is almost certainly 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 mostly 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.
MS isn't all that bad, at least not my case. See my Web page on:
This page was getting too long, so I've moved the detailed description of the "progress" of my condition and treatment attempts to a separate page, for folks who are curious and have too much time on their hands...
Diagnosis at Last!Saw neurologist #4 (MS specialist) today, he confirms a pretty solid diagnosis 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 impairment 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...
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!
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.
Last Updated: by Harriet Fell