Apr 16th, 2002:   I've created this page as kind of a short list of symptoms. After telling my story 4 different times at Walter Reed, I found their discharge summary lacking in more than a few areas. Hopefully this will help. I don't want anyone missing out on key symptoms which may aid in a diagnosis.

  • Extreme exercise intolerance in all skeletal muscles. Muscles quickly fatigue to failure during any repetitive motion.
  • Extreme gait difficulties requiring the use of a wheelchair or walker. This is brought on especially when attempting stairs or walking up or down ANY degree of incline/decline. I can feel irregularities on the floor you can't see with your eyes. Also occurs from squatting or stooping. Standard neurological exams cause severe arm/leg/hip/rear pain and weakness that has lasted up to 6 days and requires assistance for mobility.
  • My left thigh goes numb if I stand in one spot for roughly 10 minutes or so. This started in late June 2003. The numbness lasts approximately a half an hour or so after I start moving again.
  • The muscles on my left cheekbone twitch occasionally. It usually only lasts for about 30 seconds, more or less. Also on the right side more between the cheekbone and eye. This is weird too - you know when you smile on one side of your face how the cheek muscle goes up? On the right side I can do it at will, over and over and over, no problem. On the left side I have to mentally concentrate on it and it's still difficult to do even just a few times.
  • General muscle tenderness/soreness and burning in arms, legs, hips, rear, neck, shoulders and hands; not related to any physical activity.
  • In Oct 2003 I developed Xanthelasma palpebrals on my eyelids. Four total, in a symmetrical pattern around my eyelids. As of Feb 2004 the one above my right eye has disappeared. The others seem to be lessening in size very slowly. As of June 2004 only two are prominent and the one below my right eye is barely noticeable. As of Nov 2004 the only one barely noticeable is above the inner side of my left eye.
  • Frequent lower back pain not connected to exertion.
  • Myclonic activity. Just as I start to drift off to sleep, a sudden noise, something lightly touching my spine, and sometimes for no apparent reason my whole body will just spasm/jerk. I'm usually wide awake again after it happens. This has happened once or twice a night since about September 2002. As of June 2004 this has lessened to a great degree; only happening about once or twice a week when I go to bed.
  • Varying levels of intensity of itching. At times so bad I draw blood from scratching. There is no rash present when it occurs. Mostly occurs on the head and arms, but has happened on my stomach and back too. **This stopped once I started back on Elavil in Jan 2004. The itching occurred both times I was off Elavil.
  • Twitching of muscles just under my left eye (as of Oct 2004).
  • Shortness of breath especially after a physical activity like dressing or undressing, etc.
  • A warm feeling on the bottoms of my feet from time to time.
  • Near vision impairment. Attributed to age, I now have bifocals for reading.
  • High frequency hearing loss documented during retirement physical. I actually failed my hearing test 3 times and had to see an audiologist. Dec 2004 - I forgot to mention that I've been dx'd with Tinnitus by the VA. 10% disability for each ear. The ringing in my ears is getting really annoying as of late. Were it not for the meds putting me to sleep at night I can easily see how this can drive someone nuts.
  • Night sweats. Hasn't happened lately but did a lot before all this started.
  • Dime size lump on body side of right bicep. My new PCM (Aug 2003) says this is a swollen lymph node.
  • Occasional slight vision blurring especially when the fatigue is real bad.
  • Extreme fatigue not necessarily brought on by physical activity. Some times I just wake up with absolutely no energy.
  • Sep 2004 - I've been experiencing urinary difficulties similar to what you would get with an enlarged prostate. In Dec 2004 I was examined and tested and both the exam and lab work came back normal. Supposedly these symptoms can also be caused by metabolic disease.
  • My grip strength has diminished to where I can't open the bag inside a cereal box. As of June 2004 I would have to say I've lost about 60-70% of my hand strength.
  • Cold spots on legs and feet. Since around May of 2002 they've appeared on other parts of my body including my neck, shoulders, stomach, and arms. Feels like the part is freezing from the inside out. The parts can appear mildly pale when it happens, but not always. At times it appears the cold spots happen in muscles which have fatigued, other times not.
  • Sleep disturbance. Other than the myclonic spasms/jerking which still happen, my former sleep disturbance has been pretty much in control with taking Amitriptyline and Klonipen each evening a few hours before I go to bed.
  • General arm and hand weakness. As of December 2004 my hands fatigue after about 15 minutes or so on a keyboard and they turn red and physically swell. They also feel frozen most of the time.
  • Extreme arm/hand weakness/paralysis resulting in temporary loss of use (3 times since 12/2001) due to repetitive physical activity.
  • Soreness and stiffness in the neck.
  • I always feel a "thickness" when I swallow.
  • Occasional minor stroke-like/seizure events. As of June 2004 I would say the incidence of this has lessened to maybe 1 or 2 minor events per month. When it happens my whole body will jerk like I've been shocked and it feels like my brain quits and has to restart. All this happens within a second or two.
  • Uncontrolled movement/twitching/buzzing of various muscles from time to time.
  • Fluttering feeling in leg muscles. Usually only after over doing it now (Feb 03). As of Oct 2004 I'm also feeling this fluttering sensation in my abdomen and groin muscles, as well as my feet. Occasionally I feel a little of it in my arms, but not much. This is getting really intense and annoying in the groin/abdomen.
  • Tingling in the feet. Usually only after over doing it (Feb 03).
  • Right eyelid drooping.
  • Occasional heavy breathing.
  • Officially diagnosed with Fibromyalgia in Jan 2005. My past Rheumatologists already said I had some Fibromyalgia mixed in with whatever else I have, but it's not the major problem.
  • Restless Leg Syndrome (dx Dec 2001). Clonazipam works well for this.
  • Acid Reflux Disease (dx Dec 2002) starting Sep 02. I'm on Zantac now (since Nov 2004) which isn't working as well as the Aciphex I was taking before. My PCM agreed to switch to Zantac because of some of the possible side effects of Aciphex (sudden death, coma, or muscle pain).

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