New Here - Anxiety and Loss

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Fabina57, do not go to the ALS boards. It's going to make you much worse. There are usually other people, like yourself, full of misinformation. You'll leave thinking that because your head hurts, you must have ALS. Don't go there, please.I have everything you have. I took a new medication and it gave me neuropathy in my hands, and all of this lovely twitching. I have a lot of pins/needless, numbness, tingling, pain, cramp like pain, aching, soreness, stabbing, bee stings, discomort. You name it, I got it. Because I have neuroapthy in my hands, I also had a lil' atrophy. Very slight. Almost 10 months ago when this started, I thought I wouldn't be able to walk or use my arms, or worse, be dead. I was wrong. I'm still here and that's a wonderful thing.Even after all of this time, I still come here to ask questions. It took me a very long time to even sign up on this board. Your visit with your Neurologist will only comfort you for a short time.Remember, everything you have points AWAY from the dreaded ALS. Away. One more time: AWAY. It doesn't make you closer to an ALS diagnosis, it puts you in a further off place. Even if you were to have neuropathy, that is NOTHING like ALS and you won't die from it. I have it in my hands, and probably nerve inflammation throughout my body, but I don't have weakness. When I THINK I do, I'm always able to lift a weight of some sort. Even that is a bad thing though, because I'm letting my thoughts get the best of me.I know it sounds funny, but every time you have pain, pins/needles, numbness, tingling, etc...you need to smile and be happy, because even though it sucks, it points away from that disease. ALS patients don't feel a thing until well into their disease and by then, you don't need a Neuro to diagnose you. You wouldn't be able to move some of your body parts. Don't go to those ALS boards. Stay here. These people know what they're talking about and can help you. They've been patient and loving enough to take time out of their day and answer your same questions over, and over again. Be thankful, and stay here.
 
And you will see them growing, because nobody yet had died from BFS.Probably you should look to the posts od user named Invisible Twitcher. he is a guy just like you - quite suddenly he had got such severe issue of health anxiety that we all spent a lot of time convincing him he is not dying. he has over 2 years of twitching and other symptomes for now and recently he came up with some concerns again - but with a concerns only - and before he was pretty sure he is dying. He was complaining, crying and persistently looking for ALS symptomes - but it seems like he started to care after himself and ALS fear slowly releases his mind and he becomes more healthy and more confident.Same would be with you, if you put a bit of efforts.
 
Yes surely. On my experience, the best way is to treat anxiety by meds (in your case it is really necessary because your condition kicks you off from normal life) and talk about the fears with speaking therapist. In that case you would really work on your fears and they can disappear more efficiently and you would be able to cope with them or with anyother fear which might reappear in your life.it also reveals great resources which now are just suppressed. I did it, and you can do it too! many people here and worldwide did it and enjoyed the results ;)
 
Absolutely. We are not attached to a single mode - you could feel slow or fast fascics, buzzing, jerks, worm-like twitches whatever. Unless your muscles are still working for you, it is all non-relevant.
 
You got cleared on EMGs and your physical exams. What you've described are sensory symptoms and have nothing to do with motor neurons. You don't have ALS, there is absolutely no way you have it.
 
Sue,I try to live with my widespread twitchs but i don't undestand why hands et forarms have tingling, it's like nerves were irritated. These sensations don't go away.
 
if you still can use your arms, consider that therre is nothing bad in it. For example, Chriis has twitch in deltoid which she can not feel, but she still can use the muscles, so it is OK.What is IRM that your doctor give to you?
 
I am sure only about other fellows here having such twitches without clinical weakness, I can not be sure about your particlular one, but I would admit that such twitches are still possible in BFS.And we have some fellows here wjho even were diagnosed with MS (SuzyQ is one of them) but later diagnosis was discarded.
 
Having been intrigued by the 90+ replies that this post has gathered, I like my friend seepi27 felt compelled to reply.1) you have had 2 emg's. I'm a lawyer and have worked in medical malpractice cases. I have seen malpractice at its finest. you have had 2 clean emg's, if you had only had 1, I could maybe, just maybe understand your concern that it might have been done wrong / misinterpreted or gave false results. An emg is almost fool proof to read and is a prediction of ALS for up to 1 year before onset of symptoms. 2 EMGS means if your still worrying about ALS, you need meds / stronger meds or a shrink.2) you say you have researched als for 2 hours per day and STILL think you have als. This in itself makes me wonder what the *beep* you were reading. you have symptoms that are generated by problems with your sensory nerves. Unless you have found some ground breaking research that says the sensory nerves are affected in als (they are not) then whatever you are reading you are failing to make the connection that your symptoms are not even close to what an als patient suffers.3) why would you even consider going to the ALS forum. Those people are there for each others support, as their bodies are ravaged by a deadly disease, some of them type with special equipment that allows them to use their eyes to type, others use their toes to type because they cant move their arms/hands. These people discuss things like what wheelchairs they should use, tips for swallowing food in the bulbar stage of the disease, how to manage day to day etc, not how to deal with twitching and tingling, *beep*, these people WISH they twitched and tingled.4)I am one of the people that Seepi27 refereed to that has not had an emg, i have been waiting 6 months for one due to the medical system of the country I live in. You have managed to have more than 1. I wish i had even had a clinical from a neuro to be 'cleared.' time for you to get a grip and move on.all this is said with love obviously because you are going through a sh1tty time.Jon.
 

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