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[wisozk.mina1]

Hi Everyone,First of all, let me say how great this site has been for me. I'm not sure what I wold have done without this place.A little bit about me(Sorry if this a long post). I'm a 25 year old male from Canada, and have been twitching pretty consistently for about 2 months now. Like most of you, I noticed a persistent twitch (in my shoulder), and consulted Dr. Google. Surprise, surprise, ALS comes up. Now I've never been a hypochondriac and consider myself pretty healthy, heck, I might average one doctors visit every three years up until this point, but I got myself quite worked up about all of this. This is when my body went nuts. Twitches spread all over, arms, chest, calves, you name it. The worst spot for me was, and still seems to be, my quad, just above the left knee. After a few long weeks, I went to see a GP. I made sure to mention a few of the other conditions that may produce twitching including MS, Lupus, Lyme, and so on, (I was trying to convince myself that ALS was way too rare for my age) I was sent for blood work. The tests, of course came back negative for everything, and I was dismissed as healthy. For a couple of weeks the twitches slowed down and became less frequent. This was however soon replaced by small random jerky movements in my legs and arms, along with the buzzing that many of you experience.The twitches have come back, and the jolts have faded a bit, but lately i have been having some pain in my left knee. It started out with a sore joint, but lately has involved more of the quad right above the knee that i had mentioned earlier. My leg feels weak like it's about to give out, but it hasn't yet. Also, sometimes when I move the leg slowly, it shakes rather visibly, almost like its a hyper-active reflex, or tendon problem. I went back to the doc and mentioned ALS. I was immediately given a quizzical look and asked "Weren't you concerned about MS? You know these are two different issues, right?". He did a bit of a strength test by asking me to do some squats and pushing while i pulled/pulling while I pushed. Everything seemed fine to him, so he filled out a request for some physiotherapy and sent me on my way.So a few questions I have for you all:1. How long did i take to get a referral to a neuro? Did you have to ask for it, or was it the Doc that suggested it?2.How common is knee pain with BFS?I know that dismissive doctors are generally a good sign, but shouldn't I be getting an MRI or EMG or something to rue something out?Thanks for your time!

 

[MarioMasher]

1. An MRI would be ordered to rule out MS. It is clear your doctor doesn't even come close to considering this MS. So I wouldn't worry about that.2. I had to specifically ask for a referral to a neuro. If you have to ask, it's a pretty good sign that your doctor doesn't think it is all that serious. Even after going to a neuro, I don't really think I have all that much more of an idea of what is going on with me.3. Knee pain and muscle pain and random aches and pains and soreness happen all the time with BFS. Although I'm inclined to think that it's not BFS so much that does it, I think it happens more often because people just sit around more and exercise less. It's sort of a vicious circle of "my muscles are tired, so I'll exercise less. Hey I exercised less, and now my muscles are tired." I don't think that BFS necessarily explains every little bit of achiness and soreness. But ALS definitely doesn't show up as achiness or soreness, so it is clear that that isn't what you have either.4. I am of the opinion that EMGs don't really do much other than reassure patients. If a doctor doesn't even send you for one, in my opinion that's just as good (or even better) than coming back with a clean one. Remember, doctors in the 21st century have to cover their asses in case of lawsuits. Don't you think you would be sent for tests if there was even the slightest chance you might actually have something serious?Hope this helps!

 

[AllGoodHere]

Yes to the knee problems - for years, on and off. If you can get a referral, go to a physical therapist for your knee. I say a therapist rather than an orthopedist because most orthopedists focus on surgical interventions. Chances are that your muscles in your quad are pulling (unequally) on your knee cap. This can get the knee cap out of place where it can cause pain, swelling, a weak feeling, etc. A tight muscle (or one with spasms or fasciculations) could cause some alignment problems - this has happens frequently to me both in the shoulder and knee. Both of these joints are floating (unlike the ball and socket of hinge joints). See this site As far as getting referrals - from what you say this would be a fishing expedition as nothing you listed sounds like anything progressive or debilitating. My doc sent me to the neuro (after bcfs symptoms for over a year) when I had sharp back pains - a mri revealed 2 herniated discs. He also did a emg while I was there but said that it was just a check as he knew it would show nothing - dx'd me with cramp fasciculation syndrome and offered me meds for sleep, pain, and spasms most of which were not necessary outside of getting a good night's rest. The good night's rest is most important. For all the people who are scared of ms or als I only have this to say; you must not know anybody with these diseases or you would not be confused. There is no way you could have als over months and not suffer extreme muscle weakness: if it starts in your hand you can no longer hold things, if it starts in your leg you can no longer walk. Read the 'BFS in a nutshell' post, educate yourself in facts rather than poorly written blogs. Positive thoughts always help, negative always hurt regardless of the ailment - we all make this choice for ourselves. This is why I come here only once a week now - too many people focus on the negative, misdiagnose themselves, which helps hysteria & fear get a hold of them. This is not constructive, however, I realize there are a few that may really want help from people who have lived with bfs, bcfs, pnhe, to find ways of coping and living their life to the fullest. Good luck Afehr and wishing you positive and constructive thoughts!