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  • hi razor thanks a lot for messaging me ...I have just returned from my doctor she did some strength tests and reflex tests ...she said everything looked good she prescribed zanex and prosac ...as soon as I got home I looked at my calfs and realized one is waisting away more then the other...its like every day I try and pick myself up something pops up. I have read tons of storys and cant find one that had that sever of atrophy after 2.5 weeks ...its like im disappearing at first everything was even total muscle oss in every limb ,face and butt.i am not to active and stay home with my kids so I can understand if I lost some weight loss but it took ony 2 weeks to loose so much weight...I know I shouldn't have theses thoughts but everytime I read a post of some one who was diagnosed I can match those symptoms with mine..thanks for understanding u are heaven sent ...
    Thanks Nikki, Really appreciate your advice. I am going to try and stay off this site.... If I'm ever back it will be because I'm diagnosed. I never forget what I've seen here or you and the other kind people that have helped me. I'm going to try and spend the best time I can with my kids, hopefully I will get to see them grow.
    Razor I read what you wrote here and read again your thread. I stand by what I said there. It does not sound like ALS at all. To answer your foot drop question no there is no feeling before. Just as I was completely surprised the day I found I could not toe walk so was I surprised when heel walk went. No prodrome. Remember what I said about the telephone call not going through. One day it rings next day suddenly it does not like someone cut the wire in old fashioned telephone service. You need to go back to your doctor and accept what you are told. As I said before if you have a diagnosis of fibro this all fits
    My right forearm cramps and burns as i type...... seems like everything is progressing what ever it is.
    I'm really sorry you live with this and have seen so much of it around you..... The one thing Tillie said that sticks is if I have it there is nothing I can do.... I'm trying to live day by day and accept what comes..... I really appreciate the time you have taken to give me your opinion.
    It makes no sense as my son 7 yrs old was pulling my foot down with all his weight and both hands and I could lift my foot back and forward 5 - 10 times in a row. I'm a big boy and can toe walk on both or each foot. He was using both hands but then I feel like I cant lift my foot of the gas pedal. I obviously can but feels like to requires more effort then my left foot. Should I expect foot drop?? Both Pinkys feel weak and are shaky on use. Does any of this sound similar to ALS??
    I stop walking cause my legs and back and every other muscle feel like they cant go on. I don't trip or anything. 2 months after the legs the hands and arms started. Same thing feel like I'm lifting extra weight just to answer the phone. I can still carry heavy weights and boxes but not for as long. While I'm typing this hands feel fatigued and errors start on keyboard. I have trouble writing now... short stuff is ok but more then a sentence is hard. Body cramps and stiffness has started and my new one is my right ankle feels weak.
    Nikki, Thank you for taking the time to reply. Next month marks 12 months and i don't know what to do. What I feel is like there are weights on my belt when I walk. Started of light and barely noticeable, but its like someone has added a little bit extra each week. My legs look normal and are strong if i need them to be. I can hop tip toe heal walk but normal walk feels week and after 5 minutes have to stop. After a short rest I can start walking again another 5 minutes.
    Hi again Razor Tillie is right about vms for me sorry. If you feel comfortable posting something to me on your wall I will check back!
    And seeing the comment on the AB survey. The bottom line there is people who really had ALS answered A a few qualified some b but they were the late stage PALS 2 I know are dead, 2 have vanished from forums so may be. The a and b or b answers were not PALS. Rest easy
    I had a bit of a search and can't find myself saying that to bluedog (who you notice is banned).
    To message Nikki, type her name into the TO box. She may have wall messages turned off because she is a PALS you know, she is battling this for herself as well as having watched 5 family members who are going through this or have died. She doesn't have time for being bombarded. I can PM with her.
    Legs feeling heavy - yep, he did feel his legs became heavy. About 2 -3 months before he was dead. By then he could barely breath, had NO speech, NO swallowing and could just move one index finger, no other hand or arm movement. This was NOT an early symptom and NEVER is. Tillie
    Bluedog hasn't posted here in a very long time so I never posted that today, I'm going to search anyway so I can put my comment in perspective.
    You are simply ruining your life with this fear.
    If you have ALS there ain't a damn thing you can do. But instead of pursuing with doctors you are here all the time and are scaring yourself constantly and stressing your family. ALS is terminal. If you did have it (which I seriously doubt) you are simply wasting what little time you have left. My husband was dead 11 months after diagnosis. Every day counts.
    Hon, I've just searched all my posts today and I said nothing about my husbands legs being heavy. I certainly did not remember doing that either. He was bulbar onset anyway.
    I don't doubt you have something going on, I keep saying go back to your doctor!
    I just seriously doubt it is ALS, and I do see extreme anxiety.
    Often if you read stuff here you are going to confuse early symptoms to late stage symptoms.
    After 11 months if it was ALS it would be found by a neurologist, honestly. Tillie
    Razor and twitchy - as Nikki stated - CLINICAL WEAKNESS. You read things and only take to yourself what matches up and disregard what doesn't. Yes PALS 'feel' their weakness, they simply cannot do things, not that they do things but feel weak doing it. They go to a doctor who measures clinical weakness.
    I know you are both terrified, but those who have ALS have their symptoms truly progress no matter that they feel they are fine, and others become anxious and start obsessing on every little thing happening and do all they can to match it up to a terminal illness.
    Razor, we have hardly ever had people on DIHALS been told they are just anxious who have turned out to have ALS. You must have dredged for many years to find a very small handfull and then off you go scaring yourself silly again. There have also been a few who have pretended to be diagnosed and it has become plain to us quickly.
    It is heartbreaking to see you in this anxious state, I truly feel for you both. Tillie
    I started a journal. I wrote down every symptom....and for each symptom I wrote negative thoughts followed by positive thoughts...finally, for each symptom, I wrote an action plan (which doctor to go to, tests to ask for, meds to take, etc...). Then if I took action, I wrote results of those actions and if the issue is resolved, awesome. If more actions are needed, then another action plan. Just sharing because it has helped me list everything out and gives me things I need to do. Maybe it will help you?
    Razor....I know what you mean about the perceived....and reading posts that break all sticky rules....I have seen some newly diagnosed posts where their initial posts sounded familiar....it's very scary....very.
    For me, there is a turn in my left arm symptom. Basically, it's better overall. Strength is back somewhat, twitching died down and pain is less. I've been wearing a neck brace. Still to be determined what this is. BUT a turn for the worse with my tongue: I feel more and more I am slurring. I take longer to get words out. My tongue feels tingly and as if I burned it, and feels swollen. I know anxiety can cause this stuff so I hope new anxiety meds I start tomorrow will help. But I am in panic about this. The most I've ever been...
    Hi Razor....I logged on again because I had emails saying that Nikki sent me PMs. I want to correct what I said about her clean EMG. You probably read my thread, but to be clear, Nikki said this:

    "In very early disease EMG can be normal in the other areas. Mine was abnormal in areas that had zero symptoms but very abnormal where I had issues and the surrounding muscles."

    I am not sure, Nikki, if you see this, I could not find out how to reply to your PMs. I am sorry I misinterpeted/misread your post. I hope it is ok now that I quoted from the thread.
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