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  • Hi Riggz,

    How is your situation evolving? (Weight loss, atrophy, clonus, hoffman, babinski, clinical weakness, abnormal reflexes)
    Did you have an appointment at an ALS clinic?
    Did you receive a diagnosis?
    I read that you have respiratory problems, have you been recently evaluated by a pulmonologist (CVF, FEV, Peack flow, Mip, Mep ..)?

    See you soon,

    Hey man, if you check this i would really love to talk to you about your symptoms as ive been having eerily similar symptoms and i also was a D1 athlete. Please let me knos so we can exchange emails
    My name is Rémy, I am 36 years old and I live in France.
    I read all your story that looks a bit like mine so I fully understand what you live.
    I have no diagnosis at the moment but a symptomatology very similar to yours, for 18 months now ..... and even much more (a really atypical case)
    I am followed by an ALS center for almost 1 year, I have done 2 normal EMG and other specific exam for neuromuscular diseases.
    At the moment there are no clinically identifiable signs and all examinations are normal.
    I know ALS very well and I do not agree with all that is said about the Forum.
    I have been registered on Patientslikeme for a few months to discuss and compare my condition and my evolution with others.
    If you know what the ALSFRS-R is, I estimate myself at 44/48
    If you want to talk about it there is no problem, we can exchange our views.

    Hi Riggz,

    My situation and symptoms are eerily similar to yours. Around same age as you as well (early 30's). Been thru so much testing and no answers. Just wanted to let you know you aren't alone in limbo land. I'm going down the anxiety route as well as I've pretty much exhausted the clinical route. I'm about 2 years into my symptom onset this June.
    Hey Riggz I just read about your symptoms and related so much to them. I Too am struggle breath after walking for a little. My left hand is so uncoordinated that it bugs me. My left arm burns when ever I use it. How do you deal with your breathing?
    If the fears haunt you, ask the neuro to refer you to a certified ALS Clinic. Seriously, you can't live in ongoing fear of this. An actual ALS specialists will quickly sort it out.
    Hello Riggz
    For me, my arm mobility has diminished over time with exception of waking up and losing mobility of elbow. Muscle loss has been visible for the last 12 mths. Slow gradual increase in cramping and onset come faster with less and less use. (onset of cramping). Your doctor has your medical history, and has side effects from any medications you are on or previously been on ruled out?
    It sounds like EMGs have been done, that will tell your doctors info. Unfortunately, getting answers to neuro problems can take time. I would suggest you keep a diary and note symptoms as they happen, example, time and duration of cramps, severity of them, activity you were doing, before, during and after episode of weakness, cramps etc. It may help assist your medical team in sorting out your problem. I hope you do not have ALS, it is not a club you want to belong to.
    Hi Riggz,

    Don't "push" for an EMG, but certainly do tell the doctor about all your thoughts.

    Almost all medical decisions are based on the patient's "history"; that is, the story that you tell the doctor. So give him all your story and let him figure it out. Doctors are really very bright and he'll take care of you better if you're up front with him.
    When you say they don't work you mean,weakness? Like your fingers, coordination, lack of function? Both hands? I'm just trying tore late sorry for all the question? And huge thanks for taking your time in replying
    My first was last April. Then another in June then September. And just had my most recent in March. I have no idea. My gf and family keep telling me to live my life and that I don't have ALS - I wanna believe them - I try to. But my legs hurt so bad, and my hands dont work. It's hard to get over when things just aren't working right.
    I've had 4 - they are all terrible. My legs have jerked while laying down. Brutal meaning every day it feels like I ran a marathon when I didn't do any thing.
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