Anxiety Over ALS Fears: EMG Help

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mommyLDN

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I spent months of worry and severe anxiety over the fear of having als. I wait and wait for my emg, and doc only wanted to do my legs. I get its clean, no als. Then I come on here asking one question about the emg and get a lot of very reassuring answers to combat my habitual doubt, and one impaticular user of this forum gets on here and makes on statement and puts me rite back where I started. Why would someone do this. If you guys dont know what I'm talking about then go to my threads that I have posted and look for the one titled "a bit of a relapse" and read what this person said. Its next to the last post. I dont understand the point of putting more doubt in someones head who is already struggling with trusting there doctor. I was just to much in the early phase of all this and trying to accept that I dont have it. Why???? why do this to someone. Sorry if I'm playing the whiny victom role but I would not have done this to anyone who just had there test.
 
This is the first I'm hearing that the "one poke thing is BS." We've all had the same fears and all get reassurance here that it doesn't matter where we get tested and it doesn't matter how early. Something would be detected if it was there. I don't know where the former opinion came from. Like I said, I really haven't seen that on the board before.I 100% believe that once a neuro gives us the all clear, we can rest assured it is not ALS.
 
I knew exactly what post you were talking about before I even finished reading yours, because it did the same for me . . . Your ankles have clonus, that is where the neuro focused your EMG, that and the surrounding muscles, right? SO your neuro knew what he was doing, no reason to test another area of your body, unless it was troublesome, and even if another part of your body was troublesome, if you had A word it would have shown up in the EMG near or at the muscles in the vacinity of your clonus. I am no neuro but I would wager A LOT of $$$$$$$$$$ on that.The part about waiting TWO YEARS for a BFS dx is bunk. :rolleyes:
 
Don't even worry about the EMG. The neuro can tell before doing an EMG if you have a problem. Most of the time the EMG's are done to reassure the patient. My neuro wouldn't hear of it. He just said, "It's unnecessary. You don't have ALS and it will just be one more thing to worry about." So just trust your neuro and get on with your life. I know it's hard but the more you focus on your symptoms, the worse they will seem. There are so many other possible causes for the symptoms you're having, why worry about the worst possible senario when a qualified doctor has given you a clean bill of health?Sandra D
 
As many of the people on here have said PLEASE, TRUST YOUR DOCTOR! Please don't believe someone on a message board. Your doctor is trained to find this kind of stuff. That is why he spent years in medical school. I can't say it enough.... he knows that you don't have ALS. Please believe him. Maybe you should stop reading stuff on here for awhile. Sometimes there is some scary stuff that can send you into a relapse.
 
Robynn-I will try to be concise. No one can "make" you feel fear-! :( It comes from within.If you truly trust your neuro & the good results of the studies (neuro exam...emg) you would not feel fear. A strong conviction will stand up to anything.....anyone can say! ;)
 
I said what I said because it is true. I agree that no one likes anxiety and I also agree that you don't have ALS, but that gives no one the right to spread BS. You can have als start in your hand, foot etc. Other parts of your body may not be effected yet. The emg will only pick up on what is effected. One poke diagnosis is BS, it is a dream a fantasy world. And don't confuse my BS with BFS I mean cow *beep*. The fact that you got tested in the areas where your symtoms were and nothing came back means you are good. But don't be foolish in thinking that it can't start somewhere and not show in other parts. Why do you think the criteria for diagnosis is what it is? You need both upper and lower motor nueron damage and it has to be bulbar or in at least 3 of your limbs. That is why there are stages of diagnosis and why it takes so long. I agree with you and everyone here THAT YOU ARE FINE, but no one benefits from false knowledge.
 
Some Dr's may also give a diagnosis earlier, but mine will not. I have had many conversations with him...Dr. Verma head of the ALS clinic at University of Miami. He tells me over and over again that I am fine and that it is benign, but will not put a definitive diagnosis on it until 2 years has passed with no progression. That is because there have been a special case or two where symptoms of twitching came before ALS and the patient had a clean EMG for over a year. Now it is not saying that the patients twitching was an early warning sign. The fact is that the patient (s) probably had both BFS and laster developed ALS. I am just sharing with you what my world reknowned nuero told me. So if you want to beleive otherwise go ahead. I am not spreading panic. It is what it is. The changes of you having something is probably higher odds then winning the lotto. Dr's just have to cover their asses and before I get the 100%, even though I got the 99.9% I personally have to wait two years. That is just what the Dr says.
 
This is my last email with my Dr.__________________________________________________________________________________________________I thought you had benign fasciculations. But we give 2 years to make sure nothing new develops.av-----Original Message-----From: DeletedSent: Monday, June 07, 2010 1:30 PMTo: Verma, AshokSubject: RE: Mr. Daniels Electroneurophysiological evaluation reportGood afternoon Dr. Verma, I am continuing to have fasciculation's all over my body, mainly in lower extremities. I have not developed any other symptoms such as weakness. It has been 14 months since this started and I know you cleared me. For my own sanity should I just give up looking for a reason and contribute it to Benign Fasciculation Syndrome? Thank you for your input, I just thought it would have gone away by now.
 
From now on, I'll stay away because I know the fragile state you are in. I am sorry that my disagreement with one user on how emg's are interpreted effected you so badly. I was just stating the truth, but it should have been done via PM. Again, I know you are fine. I stated that in the original board discussion and several times on here. The fact is he tested your hot spots and that is where you would find it if you were going to. The Dr. obviously didnt need to increase the search area because what he saw in your worst spot was nothing.
 
Are you really that naive to think that you can't have the beginning stages of ALS in you pinky finger and the Dr pokes your foot and you get the all clear that it still can't be happening. I wish I lived in the world you built for yourself. Don't take my word for it, ask your Dr.
 
I promise this is my last post. I think we are all saying the same thing here, but speaking different languages. Of course clinical findings need to be taken into consideration with EMG. If you have twitches or weakness in your finger and he tests and finds nothing pathological then you are fine. My argument is not against that. What I am saying is that if you took a person who is complaining about twitching and weakness in the finger and he pokes your foot it means nothing. I hope you are intelligent enough to understand what I am saying.
 
He's not being crusified for saying that his nero is saying it takes 2 yrs to be sure, he is catching Sh*T for trying to put fear back on my table. Thats it and thats all. :crying:
 
I don't think I believe that 2 year thing. I had 2 neurologists tell me that after 6 months that I would be having some major problems by then. Heck, ALS prognosis is 2-5 years. How can you twitch for 2 years and have it be ALS? Just doesn't make sense to me. What some people here need to remember is that newbies are terrified. Any little thing can set someone off into major panic. Robyn, your neurolgist said you are fine and that is all you need to think about. Even if what BFShopeful said is true, please remember that your doctor is experienced in doing EMG's and he knows what to look for.
 

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