yet another question

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zac111

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ok this might seem silly but here it goes you can see definate tonuge mass loss on the right side of my tonuge but now on my feet the big toe is touching the toe beside while on the left side the big toe and the toe besiode it has a gap with my tonuge the way it is im worried that mabey my right foot is getting spastic are something just wondered if this is happenend to anyone else here.im going to the muscle specialiost next thursday guess heel be able to tell me.
 

Jamiet

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Zac,

have you noticed if your shoes don't fit as good any more?
 

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Hi Shawn - forgive me for not remembering things, sometimes I'm shot like that. Did you have a muscle biopsy? If not, maybe you can get the muscle specialist to do it. I would insist on it. With the progression of your symptoms, that is bound to give you an answer. Leslie
 

zac111

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my shoes still fit the same.thank goodness,i didnt get a biopsy yet because the last time i saw him was a month and a halph ago and the only problem i had at the time was twithing in which he could not see my tonuge has gotton bad in this little bit of time but im sure he will do one pretty quick now,its scary because sometimes i try and tell my self its something simple when deep down i know it isnt i think what scares me the most is knowing im going to have to tell my 2 children something bad is happening to me i just dont think they will understand.
 

zac111

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well guys i go back to the neuro which is a muscle specialest tommorrow im pretty sure he will be able to tyell me whats going on by looking at my tonuge tommorrow,guess well find out soon enough wish me luck.
 

Jamiet

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Shaun,

Ask him to do an EMG of the tongue and the bulbar muscles.

Good luck ok....

rgds,

Jamie
 

ltr

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Shawn - write down your questions! If you draw a blank, look back through some of your posts and write down whatever you need answers to. Tell the doc that you know something is going on and you want to get answers so you can plan for your future. Like Jamie said, tell the doc you want an EMG of your tongue and other testing. Good luck. I will be thinking about you and pray for you~Leslie
 

Jamiet

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shaun,

REsults from todays' appt?
 

zac111

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ok guys that was the weirdest one yet the doc come out in the lobby and told me that he couldnt see me that he was a second oppoin and that i needed tp go back and see the neruo which was the one that miss diagnosed me to begin with i couldnt believe it i told him that i stayed off from work so that he could look at my tonuge and that he could at least do that.well he took me back and looked at it just a quick glimpser and told me it looked like an ulcer to him but he wasnt sure,that id have to see someone else and he also so told me that he saw me the one time before and that then i didnt have any neruological problems and that he didnt know why i had swallowing problems.he didnt even check my gag reflex are anything like that not even my reflex so im done with theses stupid doctorsa no more for me,then he told me he wouldnt be charging me,i thought to myself that would be a good thing.all these doctors are just weird.
 

Jamiet

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Shaun,

I was going to tell you that....i dind't want to spoil your day. same happens to me. They are not interested, unless your stumbling in, can't walk, talk, speak, crap...eat.....yell.....

You have to be 1/2 way crippled before they even take notice. They will not notice just your tonge. You are going to have to wait it out man, i was in the same boat, its' been almost a year and they are just now starting to notice stuff and they are still telling me i'm nuts...

take care and hang in there...we're here for you.

rgds,

Jamie
 

ltr

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Do you guys remember the quack second neuro I saw? He jumped around the room holding his roll of belly fat saying that things change, but he doesn't get all bent out of shape about it, so why should I! I know how it feels Shawn, I traveled two hours to get there, it was a teaching hospital at Upstate Medical Center. I was soooo heart sick when I left there, felt there was nowhere else to turn. Don't give up Shawn, get on the computer or the phone book and get yet another neuro. You don't have to tell him about the second opinion. Are there any als support groups around you? Just because you haven't been diagnosed with it doesn't mean you can't go to one, especially since you have symptoms. Maybe they can help. Good luck~Leslie
 
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