Recent content by NekoiStar

Hello, Joanna here, Its been a while since I have posted but I wanted to ask the community a few questions in regards to my progression and some conflicting data I've received over the last year that has my doctors a bit at odds of what is going on with my diagnosis. I will be as succinct as...

Sorry for disappearing for so long, progression seems to come in every 3-6 month spurts. I just wanted to say hi <3

I'm back from the UK, very tired but I am so much more fulfilled. I will post more details when I recover from the 28 hour trip back!

Hello again, I went to see two movies with my Dad this week, we saw Thor: Love and Thunder, and then Top Gun: Maverick. Both were excellent and I recommend them if you're into those kinds of movies. I am currently packing a bag to prepare for my flight to Portland, Oregon, for my 2nd opinion...

Hello again, I have this horrible habit, of isolating myself when I'm sick or unwell. This normally doesn't extend for very long outside of the sickness, anxiety, or depression I'm experiencing for a few days, a week or two at most. I've always expressed that I'm an introverted person, but in...

Aaron, You're so brave to drive those super-fast cars. I'm anxious enough just driving my honda civic during heavier traffic times here in MT! I am reading so many books and re-reading ones I have loved. I'm also preparing to go on a month-long trip to the United Kingdom to spend time with my...

Aaron, From the swallow studies it looks like I only have some residue on the back of my tongue from the variety of things they had me swallow and it seemed like the rest went down normally. My swallowing issues though started after I had COVID in September of last year when I would...

Hello Aaron, I've been reading up on some of your story as well, I'm sorry if I haven't responded to them... I just am scared of giving bad information since I'm so early into this myself. My doctors have put me on Neudexta and I was able to start it this weekend after it took a while for my...

Hello, Some good news is that besides a bit of nausea over the last day and a half it appears I'm through the worst of it. I am going to continue to use the trulicty another week and see how it goes over. I am still very sore and dehydrated from the overall experience with some weakness...

Thank you Nikki I was on trulicty for a time, for my diabetes and I had run out and my insurance dragged their feet on approving a new set of doses and I went about a month without it. I just started it up again the other day, and I know that last time it made me nauseous but not to the point...

Hello everyone, I was up all night throwing up and being on the toilet. When I was finally able to sleep I ended up with really bad leg/foot cramps. I'm now really weak and scared to eat anything as throwing up is such a horrible experience for me. I thought I was going to die at one point and...

Thank you so much Kim, I appreciate the time you put into responding to not just me, but a lot of other folks. You give me the courage and heart to carry on. I hope you have a happy 4th. - Joanna

Thank you Igelb, I know I should be more grateful... because if this is ALS I don't seem to be on a fast track as far as progression goes. I'm just so depressed and down, and just trying to get up some days has been really hard to do. I have my 2nd opinion at OHSU in Portland here on August...

Hello again, I am just posting here to vent. I'm so angry today, I'm mad at this dumb thing called ALS, I hate how it's slowly taking everything I love away from me. I'm just upset and mad today, I'm so sorry, I don't mean for it to bleed out into the world around me, but it all just came...

I just wanted to say hello, and that I love you all and am grateful for all of your love, hope, and encouragement. I'm still crying a lot every day in spurts, but I get to start Neudexta tomorrow and I also get to schedule out my 2nd opinion and PEG tube placement, so lots of good movement for...