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  1. Kastii
    03-15-2018 07:00 AM - permalink
    Thanks for your reply.
    I am like you, in the morning as rusty, stiff, and then it's better later in the day.
    Do you have results on your respiratory problems?
    have you seen an ENT for your swallowing problems?
  2. Grieg
    03-14-2018 05:02 PM - permalink
    Hi Remy, I am sorry you are going through this and getting worse. Its not nice for anyone. I did a total of 5 EMGs. The first 4 were after 11-16 month after symptoms started. They showed some fasciculations but nothing more. The last EMG that I took 24 months after symptoms started showed fibrillations and positive sharp waves (active denervation). I am not registered on patientslikeme. I think the only thing to 100% confirm/rule out ALS is time. If you continue to progress steadily you should redo the EMG. Normal EMG is a very a good sign but like in my case it sometimes takes some time before abnormalities show up. I also found that the last EMG was very thorough so perhaps tell the person doing the EMG that you are concerned and that they should be thorough and take their time. But if you took them at ALS specialist centres that is reassuring for you.
  3. Matt21
    02-22-2018 07:14 AM - permalink
    Bonjour! I am actually in france this week, what a small world. I have no idea what is going on with me. I am really nervous about all of this because it is in decline. I honestly don't know what to recommend to you as it is such a difficult situation to deal with. My life is in limbo, never knowing which way to push. On one hand, I am doing "ok" at work with opportunities, yet on the other, I am just a nice fašade with so many issues inside that I am just waiting for the moment for something to give. Stay strong!
  4. Studavey
    01-24-2018 08:00 AM - permalink
    Hi Remy nice to hear from you. Yes I have been off work for 5 months now, it has completely destroyed my life. Praying it is not ALS. Searching for a proper diagnosis and very much hope for possibility of treatment and recovery.
    What is your schedule of investigation?
  5. corwin
    01-22-2018 03:39 AM - permalink
    Thank you for the message.
  6. Microping
    10-15-2017 04:02 PM - permalink

    I have received your message and it sounds wonderful since your condition seems stable. Has your doctor consider PMA or other LMN dominated decease?

    Best regards,
  7. Microping
    10-09-2017 05:30 PM - permalink
    Hi Remy
    How was your visit to the ALS clinic?
  8. Microping
    09-25-2017 09:09 AM - permalink

    Wonder if you have checked for cidp?

    Best regards,
  9. corwin
    07-30-2017 02:12 PM - permalink
    This shaking is something with comunication between nerves and muscles. Like some chemical is not prodused.
    I hope that this is CIDP or some kind of neuropathy or LUpus or some autoimune because afther plasmapheresis I was ok for 10 days - no pains, no twitching, full with energy. ALso corticosteroids are benefit for my condition...
    I have also trouble breathing and swallowing - like the nerves are damaged...
    Really don`t know...
    Our best ALS specialist told me I dont have ALS - with all symptoms and tongue atrophy.......
    Maybe CMT ....
    DO you have atrophy in muscles??? I have in hands bilaterally and wrists but no lose of fine skills...
    I wil make next week
    ALl doctor tell me this is
  10. corwin
    07-30-2017 02:08 PM - permalink
    In my case there are very strange and atypical but I don`t know what to do.
    In my country we don`t have good neurologist..
    I count My emgs - I have 17 for 2 years...
    NONE have fibrilations and PSW but in all I have denervation which is chronic.
    ALso prolenged F reflex ( which i read is symptomatic for als and Cidp)
    also a lot of fasciculation and pollyphasic mups.
    I have burning , symptoms are bilateral and almost equal, also jerks, and pain lika stabbing with knife. Also heel bilateral and finger joint pain, blurry vision, and full use of my body. This things point away from als but hypperreflexes ( very very hyper) tongue atrophy and progressive symptoms are for als...

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  • About Kastii
    What's your relationship with ALS/MND?
    I am interested in learning about ALS/MND.
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