Recent content by Cmh89

  1. C

    @April E you’re right, I wouldn’t say I really have emotional lability. I am of course stressed...

    @April E you’re right, I wouldn’t say I really have emotional lability. I am of course stressed about this situation but not laughing/crying/angry at inappropriate times. My cheeks/tongue/jaw/and lips are stiff and making speech difficult…I seem to have random spasms in my jaw and cheeks. I...
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  2. C

    @Wobblyheart she did my tongue. And I think my left trap? I don’t have the report (which is also...

    @Wobblyheart she did my tongue. And I think my left trap? I don’t have the report (which is also making me nervous that it’s taking so long). But I’m worried it’s all UMN related in my mouth…constant stiffness in cheeks/jaw/tongue/lips, speech difficulty, and increased gag. I’ll have to talk to...
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  3. C

    @Wobblyheart great news!! I do have active denervation in my right lower leg. Everything else...

    @Wobblyheart great news!! I do have active denervation in my right lower leg. Everything else was normal. I haven’t seen my report yet either. I ALSO fear a Pseudobulbar palsy, as my jaw/cheeks/tongue and speech are stiff and affected. I have an appointment for a physical exam next week with the...
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  4. C

    @April E thanks for your prayers! I have a follow up appointment with the neuromuscular doctor...

    @April E thanks for your prayers! I have a follow up appointment with the neuromuscular doctor next week for a physical exam. I’m still concerned about my mouth/face/speech issues but hoping for something manageable (my mind is jumping to Pseudobulbar palsy and I’m trying to talk myself out of...
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  5. C

    ALS concern

    Nikki…correct! Specifically my left thumb and index. Normal results there (per her verbal report). That and my lower cheeks/jaw/tongue area were my main concerns. Hand might be an intermittently pinched nerve somewhere along the arm, she’s not sure. I’m going to think positive that there’s...
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    Hey there! Checking in to see how you are doing?? Have you had your EMG?

    Hey there! Checking in to see how you are doing?? Have you had your EMG?
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  7. C

    ALS concern

    Good morning all. I had my EMG with Dr. Johnson at Ochsner. She is apparently the co-director of the ALS clinic there so sees/manages it quite frequently. I do not have the official results of her study yet, as they haven’t been uploaded to the portal. She did both legs, my left arm, my...
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    My youngest will be 7 months tomorrow. I feel sick thinking about them growing up without me. So...

    My youngest will be 7 months tomorrow. I feel sick thinking about them growing up without me. So that overwhelming feeling is familiar. You still have the possibility of a normal EMG ahead of you, so hold on to that hope!
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  9. C

    I’m honestly not coping at all. I’m not sure how to face a terminal diagnosis and be happy with...

    I’m honestly not coping at all. I’m not sure how to face a terminal diagnosis and be happy with my three children. While I completely understand a progressive muscle disease isn’t what you want either…I’ve found myself wishing for that instead (wishing for some rare cancer instead, even). I hope...
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  10. C

    ALS concern

    Yes I am on the patient portal thanks. She is in the same health system as the last neurologist, just on the other side of the state (no neuromuscular docs here). I appreciate your guarded optimism…even if you’re actually thinking otherwise. Here’s to hoping for literally anything else!
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    ALS concern

    Thanks for your response Nikki. Trying to stay off this board, but it’s tough. Dr. Johnson added me to her schedule to do another EMG on the 27th, with the follow up for 5/9. I assume if she sees clear ALS at the time of the EMG she won’t make me wait until the 9th to tell me so. Has anyone...
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    @April E my mri was normal. I’ve been referred to the ALS clinic in New Orleans and have a...

    @April E my mri was normal. I’ve been referred to the ALS clinic in New Orleans and have a repeat EMG next week. How did yours go?
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  13. C

    Hi there. I sure hope your issues are just postpartum related…it can be a very stressful time...

    Hi there. I sure hope your issues are just postpartum related…it can be a very stressful time for the body. Please let me know how your appointment goes. Best of luck 🤞🏻
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  14. C

    ALS concern

    I have been referred to Dr. Kristin Johnson at Ochsner in New Orleans. She reviewed my workup so far and would like to repeat her own EMG…I’ve been scheduled for May 9 but they are working on getting me in sooner. Does anyone have feedback on this doctor? I’ve lost a significant amount of weight...
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    ALS concern

    My b12 panel and C-spine MRI were normal.
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