Recent content by AnnaGol

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    Mayo Clinic has the same approach as UCSF, they want me to send them all documentation and then...

    Mayo Clinic has the same approach as UCSF, they want me to send them all documentation and then they will take the decision whether they want to see me or not. I’m back to the square one.. feeling so helpless
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    @Wobblyheart good luck with EMG!

    @Wobblyheart good luck with EMG!
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    It seems not realistic to get an appointment here. I scheduled a call with Mayo Clinic to...

    It seems not realistic to get an appointment here. I scheduled a call with Mayo Clinic to schedule an appointment there, at least they don’t need referrals..
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    At least I could sent it to als clinic so there would be a good reason to see me.

    At least I could sent it to als clinic so there would be a good reason to see me.
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    Quick update from me. UCSF ALS recommended me keep follow ups with local neuro ( rejected me)...

    Quick update from me. UCSF ALS recommended me keep follow ups with local neuro ( rejected me). They also said that if I developed more symptoms my pcp should send notes to them. I checked notes from last neuro appointment and found out that even tho he admitted my atrophy, he mentioned in his...
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    @Cmc2007 agreed!

    @Cmc2007 agreed!
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    And doctors tell like: forget about ALS, you don't have it. How they can be that sure...

    And doctors tell like: forget about ALS, you don't have it. How they can be that sure.. Honestly, this is so frustrating..
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    My neurologists don't want to send referral since they think that everything is okay even tho...

    My neurologists don't want to send referral since they think that everything is okay even tho they can't explain my atrophy. Plus they messed up with appointment notes. My pcp was the only one who agreed to send referral there but my neuro said they would reject me since I had clean EMG.. They...
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    @Cmc2007 is it worth it to go to Mayo? I have Stanford and UCSF (With ALS clinic) but it’s...

    @Cmc2007 is it worth it to go to Mayo? I have Stanford and UCSF (With ALS clinic) but it’s incredibly hard to get an appointment there. They request all the documentation from doctors and referral. .
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    @Cmc2007 agreed. My doc said that if Emg had done on atrophied muscle it should show something...

    @Cmc2007 agreed. My doc said that if Emg had done on atrophied muscle it should show something in my case. But nothing was there.
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    @Cmc2007 my last neuro scheduled my next emg for August but it not for checking suspected ALS...

    @Cmc2007 my last neuro scheduled my next emg for August but it not for checking suspected ALS, but to check any pitch nerve. I will lost all my arm muscles by that time lol
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    @Cmc2007 have you had Emg?

    @Cmc2007 have you had Emg?
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    Honestly I’m so devastated to see muscle deterioration so fast, I’m only 2 months in having...

    Honestly I’m so devastated to see muscle deterioration so fast, I’m only 2 months in having symptoms and muscle loss is significant, and I see that it progresses every day more and more. And I can’t get any help..
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    Also I have super bothering symptom - jerking.. limbs, head, any part of the body like hypnic...

    Also I have super bothering symptom - jerking.. limbs, head, any part of the body like hypnic jerks but during the day. Nobody really cares.
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    @Hensleemom atrophy is not only in the arm, but I have stiffness in my legs especially above the...

    @Hensleemom atrophy is not only in the arm, but I have stiffness in my legs especially above the knees. I feel like I’m crazy too I’m trying to get an appointments, referrals but doctors think that I’m anxious and all this, but hello.. atrophy, weakness, stiffness..
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