hopesprings
Member
- Joined
- Apr 23, 2012
- Messages
- 10
- Reason
- Learn about ALS
- Country
- CA
- State
- Ontario
- City
- Toronto
Hello everyone, I'm posting here as I'm hoping to benefit from everyone's breadth of knowledge and experience and I would love to hear everyone's thoughts.
I'm female and 27 years old. I've been healthy my whole life except that I'm hypermobile (all my joints extend beyond the "normal" range), low B12 level and an issue with my right hip flexor for 4 years now. I'm also a student in a foreign country where I have limited health insurance (just the basics, like GP visits).
My health issues started in Nov 2011 - firstly, I was "overexercised" and ended up with excruciating pain/immobility in my elbows and 2 weeks later during exercise I experienced a sharp pain in my left rhomboid (mid-back muscle) and was unable to breath deeply for 5 days after, which was very scary. At the time I had no insurance and it mostly went away, so I did nothing about it.
In Jan 2012, things started going rather mad. The pain in my rhomboid persisted and began in my neck, then my chest, left shoulder and arm, as well as my hand in about 2 weeks. I then started experiencing shooting pains and burning in that region, as well as a shaking arm when in action (no rest tremors) and a vibration sensation in my upper back. All this then spread to my other arm/hand within 2 weeks. I also started twitching in my left upper arm and then all over my body at random intervals all day (small ones, big ones, everywhere!). Somewhere in here I googled and became concerned about ALS. At this point, I began sleeping loads and experiencing loads of anxiety which has now mostly settled.
In late Feb 2012, my GP said I didn't have ALS - he saw no atrophy in my hands and conducted some basic strength tests with my hands/arms and said I was stronger than him and it all sounded cervical. (I've been doing 20 push-ups, bicep curls and squats per day, which are challenging but I can complete them) He ordered a chest x-ray and basic blood tests (showed nothing unusual) and suggested I see a myotherapist. Around this time, I also did a session with a physio friend and she said that my muscles and strength looked good to her too, and said I needed to use my left arm more (I'd mostly stopped out of anxiety). Around this time I also lost 15 pounds, I believe (hope?) due to anxiety.
The myotherapist said that my back and arm muscles were incredibly tight and said that my issues stemmed from weak back muscles for postural reasons which had created painful trigger points in those areas, and she can't see any visible atrophy. Most worrying for me was that after these rather painful massage sessions, my hands would burn and my upper left arm and left back to twitch, shake and vibrate like mad again for about 3 days. After about a month of treatment most of these arm issues went except that I have a feeling of numbness in the palm of my right hand and the pads of those fingers that comes and goes, as well as painfully stiff fingers/knuckles at times. At a second GP appointment, he said that the fact that I've been getting relief from these treatments indicates that it wasn't a nervous system issue.
I also have a good friend who's a very experienced osteopath and he generously gave me 2 treatments prior to seeing the myotherapist (I took some photos for him). I had relief for about 3 days then it slowly came back. He said that didn't matter and basically the same thing as the GP and myotherapist (no atrophy, seems musculoskeletal to him, the fact that I'm getting relief from treatments is highly indicative of that). He said a nerve could be compressed at one or even two places though. He also said that if it were ALS, it would have progressed much faster?
My right arm/hand's now mostly fine and the left is much better but in the past 2 weeks I've started having random sharp pains in both feet and tingling and numbness in my left cheek which has now spread to the left side of my nose/upper lip. I also have random things too - for example yesterday I had extremely sore back muscles/malaise but that was mostly gone today, and the day before that I had a very upset stomach. I sometimes wake up with a few tears in my eyes but I don't know if this is emotional lability (or how to identify that?). The body-wide twitches continue (thigh is a big one) and last between 1-10 times then move to a different area. Also, my housemate also says that I mumble a lot and I end up repeating myself a second time often.
So, I'm very confused and a little stressed and I don't have anyone to talk to. I'm lucky enough to know several very kind medical professionals who have all been very reassuring/patient but I'm worried that they're pacifying me. And because I don't have health insurance to see a neurologist, I'm in limbo until I can get back to my home country and get this evaluated (later in the year and even then, there's bound to be quite a waiting list).
Does this sound like it might be ALS? It were ALS, would I not be experiencing relief from treatments? Would certain symptoms go away or come and go? Would I be experiencing significant weakness in my limbs by now (3-5 months in) - not just weak back muscles? I would like to believe that I have Benign Fasciculations Syndrome, as suggested by the GP, but it's hard to stay convinced.
This has turned out VERY long but I appreciate all your opinions. Thank you for taking the time to read this.
I'm female and 27 years old. I've been healthy my whole life except that I'm hypermobile (all my joints extend beyond the "normal" range), low B12 level and an issue with my right hip flexor for 4 years now. I'm also a student in a foreign country where I have limited health insurance (just the basics, like GP visits).
My health issues started in Nov 2011 - firstly, I was "overexercised" and ended up with excruciating pain/immobility in my elbows and 2 weeks later during exercise I experienced a sharp pain in my left rhomboid (mid-back muscle) and was unable to breath deeply for 5 days after, which was very scary. At the time I had no insurance and it mostly went away, so I did nothing about it.
In Jan 2012, things started going rather mad. The pain in my rhomboid persisted and began in my neck, then my chest, left shoulder and arm, as well as my hand in about 2 weeks. I then started experiencing shooting pains and burning in that region, as well as a shaking arm when in action (no rest tremors) and a vibration sensation in my upper back. All this then spread to my other arm/hand within 2 weeks. I also started twitching in my left upper arm and then all over my body at random intervals all day (small ones, big ones, everywhere!). Somewhere in here I googled and became concerned about ALS. At this point, I began sleeping loads and experiencing loads of anxiety which has now mostly settled.
In late Feb 2012, my GP said I didn't have ALS - he saw no atrophy in my hands and conducted some basic strength tests with my hands/arms and said I was stronger than him and it all sounded cervical. (I've been doing 20 push-ups, bicep curls and squats per day, which are challenging but I can complete them) He ordered a chest x-ray and basic blood tests (showed nothing unusual) and suggested I see a myotherapist. Around this time, I also did a session with a physio friend and she said that my muscles and strength looked good to her too, and said I needed to use my left arm more (I'd mostly stopped out of anxiety). Around this time I also lost 15 pounds, I believe (hope?) due to anxiety.
The myotherapist said that my back and arm muscles were incredibly tight and said that my issues stemmed from weak back muscles for postural reasons which had created painful trigger points in those areas, and she can't see any visible atrophy. Most worrying for me was that after these rather painful massage sessions, my hands would burn and my upper left arm and left back to twitch, shake and vibrate like mad again for about 3 days. After about a month of treatment most of these arm issues went except that I have a feeling of numbness in the palm of my right hand and the pads of those fingers that comes and goes, as well as painfully stiff fingers/knuckles at times. At a second GP appointment, he said that the fact that I've been getting relief from these treatments indicates that it wasn't a nervous system issue.
I also have a good friend who's a very experienced osteopath and he generously gave me 2 treatments prior to seeing the myotherapist (I took some photos for him). I had relief for about 3 days then it slowly came back. He said that didn't matter and basically the same thing as the GP and myotherapist (no atrophy, seems musculoskeletal to him, the fact that I'm getting relief from treatments is highly indicative of that). He said a nerve could be compressed at one or even two places though. He also said that if it were ALS, it would have progressed much faster?
My right arm/hand's now mostly fine and the left is much better but in the past 2 weeks I've started having random sharp pains in both feet and tingling and numbness in my left cheek which has now spread to the left side of my nose/upper lip. I also have random things too - for example yesterday I had extremely sore back muscles/malaise but that was mostly gone today, and the day before that I had a very upset stomach. I sometimes wake up with a few tears in my eyes but I don't know if this is emotional lability (or how to identify that?). The body-wide twitches continue (thigh is a big one) and last between 1-10 times then move to a different area. Also, my housemate also says that I mumble a lot and I end up repeating myself a second time often.
So, I'm very confused and a little stressed and I don't have anyone to talk to. I'm lucky enough to know several very kind medical professionals who have all been very reassuring/patient but I'm worried that they're pacifying me. And because I don't have health insurance to see a neurologist, I'm in limbo until I can get back to my home country and get this evaluated (later in the year and even then, there's bound to be quite a waiting list).
Does this sound like it might be ALS? It were ALS, would I not be experiencing relief from treatments? Would certain symptoms go away or come and go? Would I be experiencing significant weakness in my limbs by now (3-5 months in) - not just weak back muscles? I would like to believe that I have Benign Fasciculations Syndrome, as suggested by the GP, but it's hard to stay convinced.
This has turned out VERY long but I appreciate all your opinions. Thank you for taking the time to read this.