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  1. Microping
    10-15-2017 05:02 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,
  2. Microping
    10-09-2017 06:30 PM - permalink
    Hi Remy
    How was your visit to the ALS clinic?
  3. Microping
    09-25-2017 10:09 AM - permalink

    Wonder if you have checked for cidp?

    Best regards,
  4. corwin
    07-30-2017 03:12 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
  5. corwin
    07-30-2017 03:08 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...
  6. corwin
    07-30-2017 03:04 PM - permalink
    Hi, and greetings from BUlgaria...
    I really dont know what to say - this thing is overwhelming me - I can still do my daily task, but i am getting weaker and weaker....
    This starts 4 years ago and really bothers me 2 years...
    Here I met a really nice people and a bunch of moorons like some admins that are very ofencive.....
    They repeat things but we are different, arent we???
  7. Kastii
    06-02-2017 03:03 PM - permalink
    Things continue to evolve from weeks to weeks.
    I think that when the patients are young, that the start is diffuse and atypical, with normal EMG even the specialists are lost.
    Many things that some members of the forum say about muscle weakness and emg are completely false.
    I know a lot of PALS in France and every story is different.
    A normal EMG does not exclude ALS if the symptoms continue to progress over time, if things get worse.
    An EMG shows little or no abnormality if the upper motor neuron is affected.
    Symptoms at the onset of the disease are subtle and can be a small gene for several months.
    Cases of brutal paralysis of a limb exist, but they are rare.
    Muscle weakness is PROGRESSIVE and can take several months before being objectivable during a clinical examination.
    On the other hand it should be known that generally when the time between the onset of symptoms and the diagnosis is long and several EMGs are normal at the start, the evolution is slower.
  8. Kastii
    06-02-2017 02:56 PM - permalink
    The ALSFRS-R test is used to measure functional decline in the disease.
    I have 41 and your problems are very similar to mine.
    I have no diagnosis, lessymtomas have started for 18 months.
    Here's how it is today:
    - fasciculations everywhere (same language but very rarely)
    - severe fatigue
    - Short breath, dyspnea (to the effort and in I speak a lot)
    - my legs tired quickly
    - my arms are heavy and I have trouble using them normally (it tires, it burns)
    - interosseous muscles of the hands that grow
    - back and neck that fatigue quickly
    - difficulty swallowing (like a gene)
    - my voice is tired and a little hoarse
    - slight hyperreflexia at the level of the knees

    And yet I have already done 2 emg (July 2016 and February 2017): clean
    I was hospitalized in February 2017 2 days in an ALS center:
    - EMG: normal
    - nocturnal oximetry: normal
    - FVC: 110%
    - MIP (maximum inspiratory pressure): 120%
    - MEP (maximum expiratory pressure): 130%
    - blood gases: normal
    - MRI brain + spinal cord: normal
  9. Riggz10
    05-26-2017 04:10 PM - permalink
    took that test - got a 40

    what do you think?
  10. Riggz10
    05-26-2017 12:22 PM - permalink
    No clue what the ALSFRS-R is - I try to believe that i don't have this. But my weakness seems to not leave. Do your doctors tell you no way like mine do? Let me know?

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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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