Spaccion
New member
- Joined
- May 27, 2016
- Messages
- 3
- Reason
- Learn about ALS
- Country
- US
- State
- Arizona
- City
- Tucson
February 20th I noticed a twitch/spasm where my arm meets my shoulder, which was on and off for the next few hours. I was laying in bed when I first became aware of the situation, went to the mall to distract myself and it sorta worked but the spasm/twitches where still present. I figured it would go away with time. Fast forward to today and frequency has only increased, locations have spread to inner/outer thigh, calves, bottom of foot, back, gluteus, abdominal area and now the face ie. Eyes, forehead, mouth. Ultimately I'm just looking for advice, I'm having numerous other symptoms that have presented themselves as time has progressed. My first PCP NP, basically wrote all my symptoms of ass stress, I was rescheduling every two weeks as new symptoms occurred. Being a recovering drug user, a lot was blamed on my substance abuse in earlier years. At one point she said see me in 6 months which was a blow for me, because I feel my body changing but refused referrals or to run tests. Would comment "sounds like a vitamin deficiency " yet ordered no tests to verify. Eventually moved PCP this one orders test like B12, sulfate and A1C, to rule out which took place on May 5th which was about a month wait to reestablish with new PCP. Haven't spoken with her since. Seen a neurologist with a referral from the ER, with no test done other than a reflex test dubbed it BFS or benign fasciculation syndrome, in that consultation which I waited for about 2 months ended in about 10 minutes, that day we went to a movie to take my mind off of things and after walking around for a bit where my foot meets my leg tremendous pain started to occur, like I worked a 10 hour shift on my feet. Over the next two weeks I began to feel pain in my muscles that I've never felt before and is hard to explain. It's never for long periods but jumps around where the muscle/spasm would occur but long after, not immediately. I followed up with the neurologist 2 weeks later about May 20th and was re diagnosed with fibromyalgia, again no test and, Took about 10 minutes to come to that conclusion. I've been doing my best to be patient and not jump to conclusions, my frustrations lie with the research I've done. BFS can only be determined if all tests come up with no indication pointing to something specific. Because my muscle bulk looks good I don't have an MND, which frustrates me because the progression of most of these diseases doesn't specify atrophy is the first symptom/sighn as it's different from person to person. I had a video recorded of my spasms/twitches which was about 45 seconds, the spasm/twitches started at around 30, shook her hand and said yeah BFS, the video hadn't reached 15 seconds of play for her to even witness the spasm. I'm just looking for advice going into my next few visits, and some info,
Is the weakness black and white ? ie. One day your fine and the next you can't walk or do you notice gradual degrading?
Likewise is atrophy visible overnight?
Are muscle spasm/twitches apparent in the affected areas only ? Or is it possible to have weakness in the legs but spasms/twitches in the arms ?
Is the first affected area likely to be the first area to become unusable or can the first affected area fall behind a newly affected area?
Does stiffness sub side and return or always present and worsens?
Thanks in advance for any advice/help/insight and guidance
Is the weakness black and white ? ie. One day your fine and the next you can't walk or do you notice gradual degrading?
Likewise is atrophy visible overnight?
Are muscle spasm/twitches apparent in the affected areas only ? Or is it possible to have weakness in the legs but spasms/twitches in the arms ?
Is the first affected area likely to be the first area to become unusable or can the first affected area fall behind a newly affected area?
Does stiffness sub side and return or always present and worsens?
Thanks in advance for any advice/help/insight and guidance