Muscle atrophy that is not ALS

[cindymarie]

I have visible muscle atrophy (diagnosed by a biopsy in Nov 2005) in my upper left arm. It looks like a dent in my arm when I flex it at all. I have similar "dents" in my left side along the lattisimus dorsi in the rib area. The arm and rib dents have been there for a year. I now have a dent in my left thigh. These dents are also painful in a burning, achy type of way. When I use these areas for any length of time (raising my arm over my head to hang my curtains, for example) the pain becomes severe and stabbing. One neurologist says it's just fibromyalgia. My primary care doc believes I have fibro, but that this is not part of it. The most recent neurologist said that this is not a neurological problem. The arm has been MRI'd and nothing was found. The rib area will be MRI'd in the next two weeks. Blood work all looks good other than Factor V Leiden and activated C Protein resistance.

Any suggestions where to go from here? I don't even know what type of specialist to go to now.

[crystaly]

Hi, I found it interesting that your neurologist is of the opinion that your muscle atrophy is not neurological related. I have quite severe muscle atrophy and major problems with chronic pain in my legs(more so left one) plus host of other symptoms yet mine has been dx as unknown neurological disorder. Do you have other symptoms besides the muscle atrophy eg jerky walking pattern or gait problems? Chris

[cindymarie]

I probably do have a gait problem because I have a callous in the middle of the front of my foot(so it's not technically the ball of my foot) that is not on the other foot. I could just be walking differently because of the pain or the weakness though, not because of a nerve problem.

[crystaly]

Hi Cindy Sorry I can't be of much help to you I,m still looking for answers myself. Theres some really knowledgeable people on this forum though and I,m sure someone will have some suggestions. Till then Take Care . Chris

[star queen]

Muscle wasting, atrophy, or dystrophy  can be very difficult to diagnose because the symptoms overlap with each other and some symptoms can be "missing", so diagnoses is clinically "unidentifyable".  Muscular dystrophy is considered to be inherited, but many folks are coming up with several forms without family history.  Mytonic, Duchenne, Mytonia congenita, and Limb-girdle muscular dystrophy are examples of this.  Charcot-Marie Tooth Disease (syndrome), post-poliomylitis, Guillian-Barr Syndrome, and Adult SMA are some examples of progressive muscle wasting that affect the arms.  "Normal" muscle wasting can be caused by lack of use, being a couch potato, normal aging, a side effect of several types of arthritis, diabetes, and sitting too much without moving all contribute to muscle wasting in the arms and legs.  Resistance exercise, warm water baths like in a whirlpool, and complete range of motion exercises can slow or reverse some types of muscle wasting.  Hope this helps.

[cindymarie]

I neglected to mention that I'm only 42 years old and used to be very active -- jogging, biking, weightlifting.

[sprnoII]

Hi Cindy, I also have a "dent" in my upper right arm with nothing found on MRI's. These muscle diseases kind of suck because, like star said, symptoms overlap so much, and there's surely subtypes of diseases or different kinds of muscle diseases that simply haven't been formally categorized yet. Although I was uncertainly diagnosed with LGMD when I was 13, i developed symptoms of pain later, and then doctors told me that pain is not an associated symptom with MD. I was also a very active and athletic young teenager- i noticed a problem and saw the atrophy when I stopped being able to throw a basketball. Now that I'm 22, I do pain management with PT and medication. Massages help too, sometimes. It's hard to accept that there's no definite diagnoses out there yet, but trying to stay as active as possible without overdoing it or straining seems to be the best bet- non-strenuous pool exercise is great. Try contacting Dr. John Kissel at Ohio State University. You can google him. May not have definite answers, but very nice and knowledgeable guy.