brentonjb
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  • The surgery most likely caused some type of permanent nerve damage that is causing your problems. If it isn't progressive, then there really isn't any need for you to pursue it further. As long as the docs aren't worried, there is no need for you to be worried. What's done is done and now you just have to get used to your "new normal."
    Sorry it took me so long to get back to you (I have been extremely busy). The difference between previous nerve damage from (e.g. a surgery . . . as in your case) and an ongoing process like ALS would be evident with the EMG if the damage from the surgery has ceased. Sometimes that's not the case, which is why you might be showing additional signs. Given your story, though, I'm sure your neuro is not looking in the direction of ALS . . . but rather . . . problems that would arise from your surgery. Can you update me a bit on things?
    Ok I am mad at my dog! Been out of town, and I come home today, he has chewed 3 of the legs up on my dining room table chair legs. The only day he could have done it was thursday while my son and his family were here, because they took him with them until today. :(Scared to show the hubby, he already does not like him much. But I love him, just really going to have to start watching him closely...spiteful little fellow...lol
    Well, if your neuro exam was more thourough here locally--I'm wondering if it's worth my even going up there. Driving is very difficult for me, as I have trouble with the pedals. I've got obvious atrophy in my hand/arm and spreading to the other side--as well as weakness in my legs now. I need to find someone here in Orlando
    Do you mind telling me who the "non quack" here in Orlando was, please? No matter what I find out, I am going to want a second opinion with a non-quack
    Just saw that you saw Dr. Vu. Did he do EMG/NCV? What symptoms sent you there? Sigh. I don't need to waste my time trying to go if it's a waste
    HI

    ok, now I'm worried. The University is the ALS clinic I'm supposed to be going to. Did you see Dr. Vu or Dr. Katsan? I'm not going to bother if it's a waste of my time. I changed insurance carriers just to see them because they are supposed to be experts
    Hi, I am glad to hear you have a low chance of AlS, although MS is scarey in it's own (lesser) way. I have been diagnosed with MS for a few years now and am doing great. I would be happy to speak with you about MS if you are interested. I am on this site as someone I love very much recently had an ALS scare. Let me know if you want to chat re MS
    Needling the lower back muscles is not going to definitively tell a neuro whether or not you have a nerve impingement that is causing pain and other problems in your leg. That is just absurd. Get your second opinion and stick with that second neuro.
    I'm not at all sure how a neuro can look at your lower back and say that it's fine. Certainly there are those people with lower backs that are such a mess that simply looking at them can indicate a problem . . . but . . . that is not the norm. There is simply no way a doc can look at your back and know whether or not there is some type of nerve impingement. Lower back pain as an early sign of MND is also something that is not common. It's good you're getting a second opinion, because that original neuro doesn't seem to be very knowledgeable. Do bring-up the back pain. Any and all symptoms are always important when trying to reach a diagnosis.
    Myokymia is really common in the eyelid and lip. It's more of a rhythmic twitch of the same muscle fibers. Fasciculations are more a twitch here, a twitch there etc. A fasciculation does not move a limb, eg finger. But myokymia can. Eg I had myokymia for months in the muscle at the base of my thumb. It twitched my thumb.
    So myokymia rhythmically twitches the same bundles , fasciculations twitch once then moves. Now I am not sure I have explained myself very well.
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