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  1. monster
    10-29-2017 06:34 AM - permalink
    Note to self: as my memory is bad writing here has help me keep better track.
    My breathing again has seemed to progress. Morning and throughout the day I feel the shortness of my breath. I, periodically, have been getting late morning headaches.
    Started limping on my right leg all last week; to the extent to where people are asking questions .
    Fatigue this whole month has been bad. No energy after work, NONE! No cooking during the week. In bed by 8:00 the lastest.
    Atrophy in my leg is Apparent. Very little definition is left. My arms are worse
    Fasciculations in my legs are daily.
  2. monster
    09-05-2017 10:04 AM - permalink
    Note to self: memory getting worse. Reflexes not as hyper since weakness worse. RT arm cramps and weakness worse now. Make-up, brushing teeth, etc, must not using RT arm as much because of weakness. First thing in the morning I have to take my left arm, to lift my RT arm up, to turn my floor lamp on. Hand dexterity Off. tendons showing... August neurologist appointment: neuro said not weak; all fine. Continue to exercise For strength the best I can. 1/17 Emg fine.. He thinks some type genetic 'thing' with just Hyperreflexia. He's not concerned about my breathing. Hard to do my physical job; neuro said no disability because no DX :-/
  3. monster
    06-08-2017 06:54 AM - permalink
    Pulmonologist believes chronic dyspnea is caused by chronic fatigue syndrome, generalized weakness, & exercise intolerance. Sent me back to neurologist. My breathing tests since 2013 are worse from my most recent, 2017.

    Endocrinologist in 2013 & 2017 cleared me and sent me beck to neurology.
  4. monster
    03-29-2017 09:48 AM - permalink
    Note to self: still wondering how I can lose muscle mass, have flabby & soft muscles, indentations in certain muscles, unable to build muscles, and still have a clean EMG!?!? My limbs get skinnier and skinnier slowly, while my tummy gets flabbier & bigger :-( i was always in shape and worked out. How much atrophy has to be present for the emg to pick it up?
  5. monster
    02-28-2017 09:19 AM - permalink
    Note to self: 1/3/17. Emg clean. Still hyperreflexia. Hoffman & jaw jerk found on exams. BFS, Dysautonomia, umn syndrome(?)
  6. rose
    09-17-2016 09:39 AM - permalink
    thanks Dee! How are you?
  7. Matt21
    06-16-2016 10:37 AM - permalink
    Hi, Thanks for your message. I can relate to the muscle fatigue vs weakness as that's how my doctors have been calling this. After using a certain muscles too much i just can't do something after wards. For instance, I cleaned the car the other day and my hands became stiff to the point where i could barely hold my keys...Crazy tremors with just the weight of the keys! so strange.. It's hard to give a complete picture of symptoms, so much has been going on over the last 7 years. Hope for the best :) Best of luck to you as well and i will let you know if any progress is made, just in case it might help you or others that are undiagnosed and searching. Cheers, Matt
  8. Matt21
    06-03-2016 12:32 PM - permalink
    Hi, I just posted a thread to summarize my symptoms. I thought that others may be interested as well. I am still working but i am not living a normal life. I am drained of energy, in a lot of discomfort especially in the morning, i cannot run around with my kids or play sports. I can't sit on the floor as when i support myself on my arms i shake like crazy. I also need medical help for my anxiety over this, it has been preventing me from being my normal happy self. It's been so long...
  9. Matt21
    06-02-2016 08:35 PM - permalink
    Sucks to hear you're not doing better. I noticed you mentioned a perineural cysts that extends the entire length of your spine, did I read this right? I have a similar condition at the top of my spine called a syrinx. It is very small, but I did speak to some experts who agree that it could be causing some of the symptoms. In reading about perineural cysts and Syringomyelia, I learned that they can cause a lot of pain. Research Syringomyelia and see with your doc how that is different from the peripheral cysts you have... Perhaps that could explain the symptoms you are experiencing.
  10. Matt21
    06-02-2016 10:13 AM - permalink
    Hi monster, how are you doing? I've been on this forum for about 4 yrs and i have been undiagnosed for about 7 years now. I have another appointment with my neurologist in July to get evaluated and share my new symptoms with him. It has been 3 yrs since i last had an emg and i think it might be time to get another one to see if it shows anything. It's such a stressful journey to be undiagnosed for so long and at the same time trying to keep up somewhat of a normal life. How are you, your symptoms? Did anything stabilize? For me this started at the age of 31, I'm now 38. It's sad when I think back at the past 7 years and realize the pain/agony/anxiety this has caused. Cheers, Matt

About Me

  • About monster
    What's your relationship with ALS/MND?
    If diagnosed, when was the diagnosis?
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    I have an mutation of SPG11 of unknown significance.
    UMN syndrome, BFS, & Dysautonmia.


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