Neuromuscular Disease: Positive Evidence

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kphantom26

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For those scared their symptoms are some sort of NMD (***) I think we should put together a thread that has positive items in it only with what drs have told us.A combination of neuros have told me--*** does not present wit pain or other sensory items (bone type pains, nerve pains, numbness, buzzing)-EMG's are a reliable source and "sensitive" machines. They can pick up problems in those that even have one tiny twitch-If one had *** and have full body twitching, it would be more than obvious by then and a dx would have been made-If Drs are telling you that you are fine, then trust them--they dont want a lawsuite.- There are other things that cause twitching, anxiety, deficencies, thyroid disorders, MS (NOTE usually NOT widesrpead at onset), Lyme (guess what, I may have this...I see a lyme dr on my test results on Monday). Note all of these other alternatives can be managed and/or cured with medicine!PLEASE DO NOT POST ON THIS THREAD UNLESS YOU HAVE POSITIVE FACTS FROM A REPUTABLE WEBSITE OR NEURO.
 
My neuro told me:1. "I'm not remotely concerned about any of your symptoms." Since I have the exact same symptoms as most of the people on this board, he is effectively saying that to you too.2. "We all twitch."3. EMGs are generally not even necessary for this sort of stuff. They are mainly only done for the patient's peace of mind. Neuros know ahead of time if you are going to come back clean. He doesn't like doing unnecessary EMGs on people because "they hurt." He doesn't "like poking needles into people if there's no reason for it."4. I asked him to call me an idiot and he said he couldn't. But not because I'm not an idiot. He just said that doctors aren't allowed to say that.5. Stop testing yourself. "We all have weakness." We'll find it every time we test ourselves. And yes doctors self test themselves too. It's a normal thing to do but the results means nothing. Since you are doing it to yourself, the results are biased.6. If you are stressed out and anxious about things your body is doing, the very first thing you should concentrate on is your breathing.7. Pretty much all fasciculations are benign. That's kind of what a "fasciculation" means. 8. When someone with ALS actually comes in his office, it is fairly obvious. "They are generally drooling all over themselves." They have no way to control their saliva anymore, and "They are also having problems moving around without help." He said there is no way a person with ALS could pass a clinical exam.9. I said, "To you, what is weakness?" He said, "When I sit someone down for a clinical, and I pull on their arm, I want to see if they can pull back. Can they pull back? If they can, then that's not weakness. So I'll say, hey I thought you said you had heavy legs. That doesn't feel heavy to me." Less strong doesn't necessarily equal "weak."10. "Facial twitching, nose twitching, calves twitching, legs buzzing, pins and needles, burning legs... I can't think of a disease in the world that could be responsible for all of that. I'm not concerned about your symptoms at all."11. I asked what he would say to patients who have had 10 MRIs, 10 different neuros, 10 EMGs, etc. How would he reassure them? He said it would be hard because there are always going to a certain number of "problem patients." He said at a certain point doctors know how to recognize them and are understandably wary of them.12. "You don't have ALS."
 
The board moderators have said that no one on this site has went on to get diagnosed with ALS, you, me, or anyone else are not the "one". They said 90% still have active e-mails, take a random sample, a poll, I bet you find the moderators are correct.
 
I can back that up. I have done my own surveys and I have spoken to a number of long time old time (2002-2006) posters. They are all fine. Most of them are sort of embarrassed they were once panicked about this.
 
I have spoken to several co-workers about my symptoms. Three of them have told me they also twitch, two on arms, one calves. None of them are concerned at all because they did not consult google. I think, before going to google, if I had simply seen my doctor and the doctor told me it wasn't serious, would I have still been so worried? A lot of the stuff on other web sites is unreliable and we should accept that our doctors know what they're talking about and would recognize something serious.Sandra D
 
In the American Medical Student Association magazine that I used to get (my subscription ran out :p ) there was a whole cover story article on "Google Medicine" -- I wish I would have kept it, when you google things it can have it's benefits (maybe when you have a stomach virus)... but... I think WebMD is stupid and pointless after that... I believe terminal illness "symptoms" shouldn't be listed so plainly on those websites because they freak people out. (It freaked me out!) I think they should be more reserved with symptom listing on sites such as webmd for two big reasons:1) The descriptions can be misunderstood by the average person who don't understand the pathophysiology of the disease. Many of the new people who come to the board in a panic will panic because twitching is a symptom of sinister diseases, but they couldn't tell you why. Or maybe some people think what they have is weakness associated with NMD, but those with real NMD's are weak because the neurons that run to that muscle aren't there... it's analogous to the creepy movies where the killer cuts the phone line before he breaks in... ALS cuts those phone lines (neurons)...and no more communication to that muscle EVER.... you can't tell that muscle to work anymore.2) It causes anxiety because of the shallowness of the listing of symptoms... you should discuss all health concerns with a real doctor, Dr. WebMD should lose his right to practice :D) .. Trust me.. Doctors know a lot... every medical school I've interviewed at is filled with exhausted medical students who study an average of 10 hours a day for YEARS so they can make educated conclusions about our health concerns.... they aren't just making something up to make you leave them alone :rolleyes: I've reasoned through this a lot, and a lot of people seemed to be concerned about getting EMG's too early and blah blah blah... listen.. if the twitching was a component of something bad... it's going to show up in the EMG! Why? Because twitching from NMD's are the result of nerves leaving! If you're twitching and the nerves aren't leaving the muscle... then don't worry! AND STOP READING THOSE HORROR STORIES! Don't believe these horror stories online about bad EMG's, they're rare or probably lies...My neurologist has been in practice for 18 years, he examined me and then started typing on the computer and was like "Hmmm... Carolina's Medical doesn't list Benign Twitching as a possible diagnosis... I'll just put something close"... Then basically indirectly told me to not be annoying -- he said, "I've had a patient who wouldn't go away because he was twitching in his arm... finally I got him to leave my clinic after THREE YEARS" He ordered an emg, said he expected it to be normal, handed me his card said "no follow-up, you call me if you need something... they'll probably tell you your results when you get the EMG most likely"We all have times where this is going to scare us, but we're so sensitive to our bodies for whatever reasons right now. My psychologist can pin point her twitching hot spots (in her cheek and on her scalp)... But the posters on this board are a testimony to the authenticity of the Mayo study... no one has gotten ALS from just twitching... Sorry this post is so long, but I think me typing this out has at least helped me a little more, and hopefully it'll help someone else... - Jay
 
Thanks so much! I hope for more positive posts for us and those that have concerns in the future. I will post my findings after my appt at the NMD/ALS specialist. I hope for positive answers for me and everyone else here!Keep them coming guys! These are great posts!!!
 

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