Slow Onset MND: US Cases & EMG

inzTwoToneTunes

Well-known member
From what I know slow onset does not start with twitching. Plus it is a very very rare form of mnd. Only a hand full of cases in the US. And it usally starts in men over 50. I am not sure they even classify it as als. I may have a lot of people disagree with what I am going to say to you, but oh well here goes.If I were you I would schedule an emg right now. You are still very much on this vicious cycle of als fear. You probably won't stop until you have exhausted every avenue.(not to mention yourself) If you set it up now, the worrying about the test can be over quicker. It will come back clear. Then either that will help you or you will think maybe the tech wasn't expierenced or they missed a spot or you weren't twitching at the time or.................I know because I have been there myself. You don't have als. Period. I completely understand your fear. I am truely sorry you are going thru this. You are the only one to pull yourself out of this. Also if I were you quit saying goodbye to us. That alone is causing you anxiety. Right now we are a big source of security. You are unable to let this all go right now. DD
 
I agree only with DD if you get your EMG, trust the results, trust your doctor and move on. If you don't you will hop on the doctor, neuro, EMG merry go round, and never get off. I think revisiting doctors, etc also feeds to your anxiety..And if you keep going to doctors you are telling yourself, I am not okay...If you think you can trust the EMg, get it and move on. But, sometimes even getting the EMG (personal experience), it doesn't help all the time...Then you start doubting whether you had it to early to show changes, did they do the right spots, it never ends. Do whatever you have to do to accept the answer and move on....Sorry you are going through this, this BFS is devestating on the mind.Terri
 
sorry, I meant to tell you this also in my PM. An EMG is a good thing to have...it really hurts though! :D) I've had 2 of them done by 2 separate neuros and they both came back clear, but they also produced "showers" of activity, so that was good that the neuro saw that. You should do it, it will at least help to put your mind at ease...which in my opinion is the most important thing that you need to do right now.Terri is right, BFS does play terrible tricks on your mind. Soon you will learn to recognize those tricks as falsehoods and tell them to get lost, because you are otherwise very healthy!
 
I refuse to be honest. BECAUSE........ I said I'd stop after I visited the TOP neuro. I did not. apparently here I am. Now I must admit I Am not crying and anxiety ridden as I was no way. I also dont want to do this while Im pregnant (the emg) . I will just doubt it. I know myself. This is mental for me and I HAVE TO GET OVER IT. I Can do this. I've gotten over so much more other things in my life.Thanks for the advice- but a plethra of docs and now the top notch neuro. I've GOT TO BELIEVE.Lovely :sick:
 
Hi~~ I'm glad you're sounding like you're doing alot better~~BUT....I agree with what one poster said to you....allow yourself to come on here without any guilt or anxiety....this board is intended to help, and for people like us, personally, I think it's a lifesaver. I know I see lots of people, not just you, decide that this is it, that they are NOT going to come back for a while, and then they usually do...but I guess somehow they feel that they need to get off the boards in order to help themselves. Personally, and this is just me, I don't know what I'd do without these boards. It's those other places on the internet that I need to stay off of, and most of the time, I do. I just can't make myself that fearful anymore. I'm too afraid of als, I can't read that stuff. But, you know what? Everyone, in some way, is afraid of als. It's just such a terrible disease, and it's easy for people like us to obsess over it. And, when I say people like us, I mean that generally, I think that alot of us on here are what my neuro called "hypervigilant" about their symptoms. It's hard for me to even accept that, but I know deep down inside that it's probably true. That doesn't mean that we're not having these symptoms, just that we are so hyper-aware of every symptom, that we make the most of it, and then create this whole syndrome. But, I just worry about you because I remember when I was pregnant, especially with my second child, I had ALOT of anxiety issues after that. You are going through such a crazy time with hormones, and it really not only causes you physical symptoms that will freak you out, but mentally as well. That is why you NEED help and support, and I think that you get that on here. After my daughter was born, I remember I suddenly started getting dizzy spells, sort of an off-balance feeling. It caused me so much anxiety at the time, I thought I had a brain tumor. I went from doctor to doctor, and never believed the results. Nothing made me feel better. I went from thinking I had a brain tumor, to MS, to Lupus, to whatever else. The only thing that helped me was time, and the support of family. At the time, there weren't any boards like this yet (this was back in 1986)...so now I think it's so important to take advantage of any resources that you have. Come on here, read through the posts, ask questions when you need to, help others when you can, read good books, TAKE CARE OF YOURSELF, spend some time alone each day, make sure you eat well, exercise, and get enough sleep. Once the baby comes, you will be sleep deprived, and you need to be able to deal with that. And, you can with the right attitude. I had a WONDERFUL pediatrician when we lived in California, that literally changed my life. He taught me how to take care of my children, and put the other things aside. He said not to worry about how the house looks, he said not to entertain people that come over to see the baby, he said just to take care of the baby and myself, and to put my priorities in order. That doesn't mean that people can't come over to see the baby, he just meant to explain to me not to be in the kitchen making finger sandwiches for those who come over. If people want to come over right after you have a baby, they should think enough to bring some food for you and your family, to help make things easier. Don't stress over everything, just take care of the baby and yourself. One thing he told me, and I did, and it really helped with my anxiety...is to SLEEP WHEN THE BABY SLEEPS. Don't try to get caught up on laundry, or dishes, just sleep and rest. That stuff doesn't matter, and will resolve itself. You will have help from family, and gradually feel better as the baby gets older. Sorry, I feel like I am going a bit off-topic here, but I feel like I could give you SO much advice since I've soooo been where you are at!! I can tell from some of your posts that you are very anxious, and I was so in that position, and expecting a baby. It doesn't matter what the health issue was, it was always something with me. And, you can get through this, just don't deny yourself, or feel guilty for getting help. And, don't believe it when family members tell you that you shouldn't come on here, because they can't understand what you are going through. There may be alot of negative attidues towards getting on the internet, and that is true, because there is alot of junk and negative stuff out there, but this board is not one of them. I've been to doctors before that tell me to stay off the internet. And, for the most part, I think that can be true. But, with the bad, does come some good, and this board is a diamond in the rough!! It really is one place that I have found the people on here to be incredibly helpful, selfless, and willing to help whenever they can. The people on here have inspired me to help other new people who come on when I feel that I am able to do that. Anyway, I'll shut up now, but I hope to see you on here, and asking whatever you feel like asking. Personally, I know that you are fine, I completely know what you are going through. I honestly think that the hormone craziness doesn't help with conditions like this! Just to let you know, I have all the symptoms that you have had, the dents, all of it, and my neuro didn't want to waste the time doing an emg on me. You can get one if you want, but he tells me they are painful, and usually only done to reassure the patient, which doesn't always happen anyway....not because anything comes out badly, but because having a good test result doesn't cure the actual problem that we are all having, which is a lot deeper. For me, this anxiety and health obsessiveness has been going on for years, and I am just gradually trying to get a handle on it. I am still completely caught up in my als fear, but I hope that in time that resolves itself. But, I am not in denial enough to not realize that alot of my problems are psychological. Anyway, gotta run, but hope to talk to you soon!! Take care of yourself!! Val
 

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