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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 wanted to add that I've also been experiencing some GERD and hiccuping and bit my tongue a few times in the space of a week a couple of weeks ago, and that I always feel best first thing in the morning - it's only as the day progresses that these issues seem to kick in. Don't know if that's relevant?

Thanks again, everyone.
 
One thing I can tell you is that none, absolutely none of your symptoms resemble ALS. That's all I can tell you though. Hope you figire out what it is and soon.
Best wishes
 
Not even in the same book as ALS. You have no symptoms of ALS at all. Great news,you can stop worrying about that.
It does sound like back issues, and or neck. If there is any chance it's your neck, dont do push ups! Best of luck. It does sound like you should see a specialist for tests and reassurance. An MRI might help.
 
Only Dr's can tell you what is going on so please seek out additional medical attention. That being said I am not sure as to why you thought of posting here as nothing you have described sounds remotely like ALS.

Put the thought of ALS out of your mind.

Good luck to you!
 
it doesn't sound like ALS to me either. You have too many sensory issues to be ALS. Go back to the doctor and see what they have to say.

AL
 
Maybe you could go back through that post and make a list of symptoms that you think are ALS symptoms. Just a list with no explanation of how they started or how you think that they have progressed -- because the only symptom that I see that even plays in the same park as ALS is the body twitching. Of course, if you had actually read the sticky posts for this forum instead of skipping over them, you would know that the widespread body twitching is a sign of intermediate to advanced ALS and doesn't happen at the beginning. Which is, of course, why the GP diagnosed you with BFS.

You would be well-served to investigate the BFS forum at a b o u t B F S d o t c o m. You'll find lots of people with signs and symptoms just like yours.

Good luck to you.
 
I agree with everybody above. Doesn't sound like my symptoms. Best for you to go back to your doctor with a clear head. And pay for the doctor instead of getting the free advice from doc tor go og le. As they say, "You get what you pay for!"

Good luck,
 
First off, I wanted to thank everyone for their time and effort in replying. It really means a lot that you did that and to hear that my issues don't sound like ALS. And I know how long it must have taken some of you to respond, so I greatly appreciate it even more. I also appreciate this electronic shaking - it's much needed.

I think much of my concern stems from reading too much. The B F S website was really reassuring at first but then I read stories about some who experiencing sensory issues or body-wide twitching and had ALS, and then being unsure as to whether what I had fit in to the symptoms list (see below). It's hard to know about the context of when these occurred, of course, or whether that was their ALS or some other issue accompanying it (for example, having ALS and a cervical issue) but it plays on my mind. :?:

My main concerns that keep drawing me back to worries about ALS are:

- occasional sore throat, occasional twitch in lip, occasional hoarseness, biting my tongue a few times recently, mumbling (I'm actually not sure if mumbling is similar to slurring: would appreciate your thoughts?) and a couple of times when peanut butter or a pill has been difficult to swallow (getting a bit stuck in my throat, not my mouth though) for the past two months always sends my alarm bells off unfortunately. But are these ALS or just things that occasionally happen to everyone? :neutral:

- migrating pain/stiffness/sore sensation in my back, arms and hands: the sites say that pain doesn't occur in ALS but cramps do. But what's a cramp and what's pain - does the fact that my pain is short-lived in any one place (max. 30 minutes) mean that it's a cramp? What does a cramp feel like? The myotherapist's comment about my weak postural back muscles also made me anxious, but of course as far as everyone seems to be able to tell, it's not clinically weak.

- the random occasional pains that I get in the bottom of my feet - I'd read that plantar fascitis occurs in ALS (is it?) but not when and I wasn't sure if mine were considering foot cramping (as above with arms). A long walk sets off crazy twitching in the backs of both my calves and thighs, particularly if it's hot out (and of course I happened to read about one person with ALS who had exercise-induced twitching...), although this hasn't happened in a few weeks.

- the persistent twitch that was in my upper left arm/back that has since gone caused me a great deal of concern for awhile. My arm still isn't clinically weak though, I keep reminding myself of that (although my dexterity in my left hand is still a little off). Since this went my anxiety is mostly gone too, thankfully, but all the other stuff sets off that alarm sometimes.

I'm actually feeling better since I've hit that mythical "3-month" mark that the B F S website talks about and haven't developed clinical weakness (I keep reminding myself about this but kind of worry that it will still show up). I've actually noticed that when the anxiety left, I started twitching less, but I still have very twitchy days sometimes. And of course the fact that some symptoms seem have to improved I know is also not characteristic of ALS. But it still plays on my mind from time to time and I needed to talk about it with some knowledgeable folks like yourselves.

On another note, I'll never again take for granted my country's subsidized health care system. :roll: I intend to happily pay into it for the rest of my life. And I will certainly be bringing myself to my GP for an MRI and any referral she thinks is necessary as soon as I'm able (trust me, if I had the money I would have done this long ago)!

Thanks again for everyone's time.
 
Two pieces of advice for you. First, stop trying to learn about what ails you by searching online. The list of symptoms that you've turned up that you think links you to a possible ALS diagnosis makes you look intellectually underpowered. Second, if you really just cannot avoid the temptation of looking up a disease, don't ignore the dozen or so symptoms that you don't have just because you found one that you do have (oooh, see the bright shiny thing).

Try to treat your body at least as well as you do your automobile -- when it starts working weirdly, get it to the mechanic before you mess it up further.
 
Hope springs, your list was well done and reassuring. None of what you listed and how they present, are ALS related.
You can relax.
 
Again, I agree. And for sanities sake, do not use doc tor go og le as a medical expert. He's been known to be a quack. That's what brought you here in the first place. And as Alyoop mentioned before, I would refrain from any exercises until checked out by a physician (the cervical issues).
 
There's one word in your thread that shows this isn't ALS--'better'

ALS never gets 'better'--only steadily, insidiously, horribly worse. Twitches, as trfogey tried to explain--happen later--after the atrophy.

Everyone gets cramps--everyone--even kids. You've got vitamin deficiencies--B-12 can wreck havoc on the body. You're over-exercising and stressing already screwed up muscles, apparently.

Perhaps your GP could order an MRI to see if there is a pinched nerve in your neck. NOTHING in your post sounds at all like ALS. I'm not really sure what symptom you have that brought you here.

Hypermobile joints? What do the doctors say causes this? (NO--it is not an ALS sign--als affects the nerves, thus, the muscles fed by those nerves)

I'd avoid the i n t e r n e t for answers and keep with the doctor. Your anxiety is likely half the issue--believe it or not. good luck
 
I don't want to sound like a broken record here, but many of your symptoms, while not sounding like ALS in my experience with it... do sound like some cases of Lyme disease, especially the pain/cramping in the hands, etc. A friend's daughter has been taking doxycyclene (sp?) for more than a year for this; it took then a few years to actually diagnose her. Is there any chance that you were bitten by a deer tick? Not sure if they're in Europe for instance, but if you were in the U.S. or Canada, you may have been exposed.

Good luck in your search and be happy that no one here thinks its ALS!
 
Thanks for the reality check, everyone, it's been much needed. I'm going to step away from this fear altogether and put it to rest - I'll focus on keeping my body tuned well (thanks, trfogey) by eating well, resting and meditation (suggested by my osteopath) until I'm able to seek full treatment and determine what's causing these strange sensory issues and pains. I already know that a basic blood test and chest x-ray were clear and that already eliminates a lot of serious things so I'll try to focus on the positive.

HelenL, I'll ask for a Lyme test along with that MRI when I return home. I've been on a few long hikes in semi-tropical climates as well as been to some South Pacific islands on vacation about a year ago - not sure if there are ticks there but it's certainly warm enough to incubate a lot of things over there.

notme, I was born with hypermobile joints, it's genetic (Hypermobile joints - PubMed Health or Joint hypermobility syndrome | skillsforaction.com). It's come down to me and my siblings through my father's side. Because luckily it's mild, I don't really notice it much except when people remark on it, or when my ankles randomly roll and pop back up when I walk or hit an abnormal patch of something (as they have my whole life), or when I'm doing an exercise and my joints (elbows especially) overcompensate for the burden instead of my muscles, and start to hurt. It keeps things interesting, I guess.

Good luck to everyone on their journeys, and thanks again - you guys are doing a lot of good in this world by helping people out by providing this assistance.
 
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