Lisa Ryan

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]

Hi everyone, I have been away from the forum for a bit, serious family health issues, I am crushed 🙁  I just wanted to weigh in on the undiagnosed looking for opinions.  Agree that fear is the motivator and also unbelievable Frustration with the medical system, seems in all countries.  I agree that no neurologist wants to diagnose until there is…[Read more]

I am so sorry to hear this Amanda.  No doubt you are in shock and are struggling to deal with this..  everything you have said is my experience also.  Especially when you mention taking the first few steps after getting up from sitting. That is very hard for me as well but when I get going I am OK it’s just getting my body going because of the…[Read more]

That’s very touching and smart words! Thank you!

Hi everyone,  I can’t believe I posted this thread 3 months ago and I am still confused about the progression of my atrophy.  I find I am back to square one again, researching things I have already looked at 25 times.  It is so noticeable to me how many more tiny veins I can see on the top of my hand and how more hollowed out my left palm is, my…[Read more]

Hi John, you have been through an awful lot with all of those spinal issues. The only thing that ever repeated an MRI on me was for my lower lumbar area which I have set joint disorder and some bulging discs but no indication of a radiculopathy even though my doctor says my symptoms seem to be that other radiculopathy but that the MRI did not…[Read more]