Jul 25, 2004, Clinical symptom update:

I forgot to mention here before about a lump I had behind my left kneecap when I was a kid that was never diagnosed or treated. It just went away by itself. Also, I was the first of 8 pregnancies my mom went through. I survived; the next two were stillborn; my brother survived; the next two were stillborn; my sister survived; and my brother after her was born and didn't live but a few days. I have no information as to why this happened.

Apr 21, 2003, Clinical symptom update:

I received snail mail from my aunt in England today. She said there is no record of any muscular dystrophy on mom's side of the family.

Jan 23, 2003, Clinical symptom update:

Since the last update my shoulders and triceps have really been the main problem areas. I can't even reach across to rub a sore shoulder without causing pain in the other. The shoulder pain wakes me up at night, I'm guessing just from the movement while I'm sleeping since things like combing my hair or brushing my teeth even causes pain. It's reduced my free range of motion at least 50%. The slightest flex at all in my triceps causes pain. The past few days the left side of my nose has been twitching off and on. My legs, calfs and rear remain the same; quickly burning out with mild exertion. I haven't had much hip involvement lately though. I have that "almost cramping" feeling in my calf muscles a lot now and I experience a good deal of pain radiating from the leg biopsy spot on the left thigh off and on. At times that pain is so intense it literally stops me in my tracks.

Sep 17, 2002, Clinical symptom update:

At present this is what's going on. I still get the cold spots quite frequently, except now they even show up on my arms and neck. My shoulder and tricep muscles are now painful when used. My neck is constantly sore. Walking is always slow. Stairs and any type of incline quickly burns my legs out completely. I don't use the cane or walker as much because it burns out my arms too fast. The right eyelid is still drooping. I'm having a lot of indigestion/heartburn, even waking me up at night. My leg muscles in the upper thighs still flutter, but not as much as before. I do find myself waking up at night with my whole body "tensed". I'm still having involuntary muscle "jerks" occasionally. My hands always feel swollen now. My grip strength has diminished. I can't even open a cereal bag inside the box or any type of package like that. Whenever I flex my arm or leg muscles I get an instant "lactic acid" type burn which turns into intense pain if I continue. The fatigue continues daily, some days worse than others for no apparent reason. On the really bad fatigue days my vision is slightly blurry. The most severe pain still moves around between different parts of my thighs, lower back, and hips. I'm sleeping good with the med combination I'm on now.

Mar 11, 2002:   After reviewing Mitochondrial diseases I saw enough to make me want to document a lot of events which happened prior to June 2000 which may be connected in some shape or form. I'll let the docs sort it out.

Family History:  My British grandmother died of cancer in England. My father had polio as a child. Post-Polio Syndrome is close to what I'm experiencing, but I can find no genetic tie that would pass it from my father to me. My daughter is high-functioning autistic.

My sister's son is also autistic.

Addendum 26 Nov 2002: My brother was just put on meds for atrial fibrillation.

Tobacco Use:  Less than a pack a day since roughly 1972.

1971 - 1992:  Excessive use of alcohol with frequent blackouts. Presently I rarely drink any kind of alcohol.

1975 or 1976:  During one of the seizure episodes mentioned just below I fell on my thumb on a dirt/rock track and messed it up pretty good. Ever since then, whenever the right thumb is exposed to gasoline or any petroleum product (brasso, etc.) it swells up, the lymph node in the right armpit swells and I have 'railroad' tracks leading from the thumb to the armpit. It's been x-rayed, sliced and diced, stuffed with gauze, and just about everything else you can think of with no results. It's been treated with various antibiotics throughout the years. Seems like the past few years or so the events have been lessening. In fact I can't remember the last time it happened exactly. It's been called four different things by different doctors. I'm including this because of the viral association I've read about when researching different neuro-muscular diseases. I presently have a lymph gland about the middle of my right bicep, on the body side, that has been swollen for a few years now.

1975 - 1978:   Rough guess on the years here but it's in the ballpark and documented in my medical record. During that time I was subject to involuntary jerking of the muscles. It affected my whole body at times. I could be sitting in a restaurant holding a cup of coffee and the next minute the guy across from me would be wearing it. During one event I was running track and the single convulsion threw me to the ground.

Nothing was ever discovered regarding cause and the major episodes just stopped by itself. I've had very small episodes of the same since then. Maybe once or twice a year and lasting only a second or two. Very minor twitches/jerks, almost insignificant but enough for me to remember. It would feel like my brain would freeze temporarily at the same instant I would twitch. It's like I'm re-booting or something.

1990 & 1999:   Same event happened twice, nine years apart. Both times it happened in Walmart. Both times I would have a sudden onset of mild seizures/convulsions. It would start slow and progress within a few minutes to where the convulsions would shake my entire body. About the same time I would start to lose my mental capacity. Both were accompanied by profuse sweating, disorientation, confusion, tunnel vision and eventually to the point where I was still semi-cognizant but unable to see. Both times I was assisted outside where it would clear up by itself after a few minutes or so. Both times I reported the events to my commands but no follow-up was ever done.

May 2000:   During a routine physical I had mildly elevated cholesterol. My doc suggested we start on Zocor as a precaution. Within two weeks I began experiencing pain in both bicep muscles which progressed from sharp pain on muscle exertion to the current state of generalized weakness. I was taken off the Zocor within a few weeks to see if the symptoms would clear up. They didn't. After all the research I've done I now believe the Zocor may have been a trigger, not necessarily the cause.

I first noticed the pain when pouring a cup of coffee in the morning. The pain/weakness progressed fully within about 4 months to the point where it was painful to even use both hands to pour a cup of coffee with a regular 12 cup pot. After that time I could no longer use my arms to do routine things like moving heavy objects. Also, at first it was primarily the bicep muscles. I still had good strength in the triceps. I had learned to isolate my muscles when lifting weights so I could easily tell the difference. After about 10 months or so the triceps began weakening as well. My arms had always been one of my strongest parts too.

Since the onset of the arm weakness I've learned how NOT to use my arms. Any type of muscle exertion, even as mild as having the doc do a routine neuro exam, would quickly result in extreme burning pain and soreness for the next few days. The only strange manifestation I've had has happened three and a half times so far. On 1 Dec 2001 I was pulling a power plug from a stubborn CD drive when my whole left arm started shaking. I really had to wrestle with it. Within about 30 minutes my whole left arm and hand were useless. I could not make a fist. I could only keep my fingers spread apart with the hand pressed against my left thigh. It was like the 'almost' cramping feeling I now get in my legs. But it never cramped. It was like that the rest of the night. By morning I could use both again but they were extremely weak for the next two days. This has happened once more in my left arm/hand and one and a half times in the right arm/hand since then. The last time I only count as a "half" because it didn't quite progress to paralysis.

Sep 2001:   That's when the leg involvement started. It's pretty well documented on the Medical Diary page so I don't feel I need to repeat it here. In a nutshell here are the manifestations in order of progression:

  • Noticed difficulty in turning corners when walking, like my legs weren't my own.

  • Began noticing difficulty climbing stairs.

  • Began feeling an overall weakness in both legs, mostly in the upper thighs and hamstrings.

  • Day before Thanksgiving 2001 it hit hard and I was barely able to stand. Walking was shaky and only by moving my feet about 3-4 inches at a time. That's when I asked for a wheelchair. Moving around by myself was almost impossible.

  • Initially even after the real bad days, I felt kind of ok after 10 to 12 hours of sleep. The fatigue became overbearing after Thanksgiving. Within a few months I woke up with the legs already weak.

  • It quickly progressed to my hips and rear, at times feeling like they were filled with lead. The worst part was an almost cramping feeling that was similar to what I felt after running a marathon. Anyone who has knows you 'hit the wall' around 16 miles. That's kind of what it feels like. A burning feeling like there is excessive lactic acid buildup and the muscles are just out of energy.

    At times just squatting down or getting in and out of a car will put me in the wheelchair within about 30 minutes. Sometimes it takes longer. I can't even use a cane or the walker most of the time now because it burns out my arms too much. I'd rather just have sore legs than sore legs AND arms. I haven't fallen yet. I usually feel better after sleeping but it quickly progresses each day with mild movement. Some times I can't even move my legs enough to dress myself or think I can stand up to take a shower.

    My equation for a 'good day' is simply this: Get lots of sleep, get up, don't move around too much. Most of the time now I'm unable to even sit on the edge of a chair and rise to a standing position. Or if I do it quickly evokes the penalty and I end up using the wheelchair the rest of the day. Ladders and stairs are off limits.

    I had no 'tingling' until roughly the time of the Prednisone trial. After that I had tingling in both feet; quite intense and frequent. It lasted for a few weeks then calmed down to occasional tingling, just in the feet or lower legs. I've had numbness only in the 2nd toe of the right foot, and only a few times since November 2001. I have experienced a lot of 'vibrating' in which it feels like the muscles in my legs are fluttering at high speed. The weakness/almost cramping feeling moves around a lot. I feel it in the front of the thighs, back of the thighs, hamstrings, rear, hips, and I'll occasionally get pain in the lower back. The lower back pain is usually pretty bad when it hits. Overall, the pain moves around at will and doesn't necessarily seem to be tied to any particular location for any particular attempted activity. Some times it will be as odd as the left hip and right hamstring at the same time. Or just the right hip. I've found no pattern.

    I get "cold spots" on different parts of my body. It started with just the feet and has progressed to where I can even feel cold spots on my neck, arms, shoulders, all parts of my legs, hips, and rear. It feels different than ordinary cold, like I'm freezing from the inside out. These aren't necessarily bilateral.

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