Lisa Ryan

Thanks Len for your intuitive insight… yes I feel guilt when I have to ask for help because I still think I should do things on my own if I can… which is possible but at great cost and long lasting suffering.  This is difficult to navigate CK and especially without diagnosis…

thanks Trevor for the information.  I do feel the harder I go at thin…[Read more]

Hi Mark, terrible time you have had, makes me frustrated for you.   It’s awful when u fee like you’re alone and not getting anywhere.  I’ll try and reach out to my Neuro muscular dr next week but with this Covid stuff, I don’t even know if I can get in to get another Emg done.. it’s the only method he uses for a diagnosis.  Shame they can’t do a g…[Read more]

Hi Amanda, no it isn’t an als clinic specialist. The last appointment I had was in early April and he basically just wrote me off I just reiterated what the previous doctor said the previous September was in and out in about 30 minutes start to finish he didn’t take anything seriously and I lost respect for him very early in the appointment he sai…[Read more]

Thanks David for the well wishes.. sorry you received this awful diagnosis.. funny I also came from the no pain no gain mentality, pushed to extreme levels.

I too have fasciculations all over.  Sometimes it feels like they are in my throat.  Mostly cramps are in my kegs but only really bad at times.   I wish you the best!

Hi all, my muscles continue to shrink, my right thigh is very thin my wrists are very tiny and bony, my forearm muscles are so concave they have such an odd shape it just goes in and out in and out up to my elbow. I noticed when I use my muscles too much I have muscle pain for days and days sometimes a week and then I find it hard to recover the…[Read more]

Hi Kathy,  that just a mix up in the reports, the doctors said that they did not get an actual report just a note with numbers so by the time they’ve requested it and it comes back, it’s very long.. I saw my family physician 2 weeks ago and he said it shows weak diaphragm And then he said he doesn’t know what to do with this because it was ordere…[Read more]

Thank you, I’ll look into that or just supplement anyways!

Thank you so much Kathleen I really appreciate the kind words and the good advice. I have been trying to do what you are doing and saving up my energy so I have some for the kids but right now everything is spread very very thin my resources are just dwindling. My muscles are constantly fatigued and aching and the atrophy is progressing…[Read more]

Hi John, wise words and I wish it were that simple but it just isn’t this time.  When your child is facing a beast like cancer is, I am trying to keep her calm and make her fight when it is so hard.  She is fighting but I am the person she looks to for support.  I just thought that if I knew for sure I had ALS, maybe I might ask if anyone can he…[Read more]

Hi Dagmar, my daughter has a late stage cancer and I have been with her every moment she needs me for her treatments, she is petrified, has never been sick in her life and is afraid of needles.  I have been spending early mornings and long days with her along with trying to babysit the 3 grandkids one weekend day per week, i am also moving to a…[Read more]

Seems like it’s just another article that doesn’t hold any weight so there’s not much hope they will change much.

<p style=”text-align: left;”>Sorry for the typos, I couldn’t figure out how to edit it.. I was trying to say that the second opinion was not a second opinion that he just went by what his former colleagues have said , so I don’t know if my regular Neuro would see me in September..</p>

I have read the new Gold Coast recommendations for diagnosing AlS.. I can definitely say I have LMN dysfunction 100%. This is confirmed in my paperwork from my neurologist.   I also believe that I do have UMN signs but that I never receive a thorough clinical  exam.  Many things are left out of mine.  So in u ferry’s ding that they have made chang…[Read more]

Hi Tom, thanks for the info.  Currently I am waiting to see the Internist that ordered the tests.  I will see her on Monday and ask her what other tests would  be helpful….maybe she will refer me for a sleep study….I think they would be able to tell if I need any assistance with breathing.  I wake up 4 or 5 times or more every night, I am nev…[Read more]

Thanks Dagmar, I will try all these tips as anything is worth a try to improve things.  I do sleep on my side but somehow during the night I always find myself on my back, even if I have a pillow wedged in my back and between knees…

Hi John…funny for me as well my FVC was ok, not great but they still continued on with further testing.  It was the test where you breath in and out while reclining and then while flat that they found the weakness but there is no doctor following up on this.  It’s very strange to wake up instantly with a gasp for air isn’t it…its quite d…[Read more]

Hi Anne, thanks for your response.  In your case, what did they say is the cause of your low MEP?  So much so that you are on oxygen?  Is this all stemming from probable ALS or they just didn’t know and put you on oxygen?  Have you had any of the sleep studies done that John has had?  What type of evaluation are you having EMG/NCS Clinical?  I am…[Read more]

More confusing symptoms continue.  I had an internist looking into my chronic cough.  This led to a lot of Pulmonary Function Testing.  She finally said she can find no mechanical reason for my cough and finally tested the strength of my breathing muscles.  I just recently got the numbers only (no report yet) from my GP and it showed:  Maxi…[Read more]