Newly diagnosed on 5/10/2022

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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 out at once today. I haven't yelled at anyone, I'm not upset with people, I'm just upset with this condition.

I'm also scared, I am starting to prefer dreams to reality... in my dreams I'm whole, I can talk and move and function like normal.

Is it ok for me to feel this way? I don't want it to consume me, I just want to vent.

- Joanna
Of course, Joanna, however you feel is how you feel. There is no point in trying to feel what you don't, or denying what you feel. ALS sucks.

What can help with the not letting it consume you part, is figuring out what your goals are for the rest of your life, and when you have processed the diagnosis (which you probably won't until after the second opinion in Oregon -- is that OHSU?), you can start working on those. You don't have to know yet how you will deal with everything involved + your chosen to-do list. It's just good to know that's what you want to do.
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 2nd, there was an opportunity for an earlier appointment on the 21st of July, but I panicked and took the later date. I'm tempted to call back on Tuesday to see if that date is still available for me as I would like to get it done ASAP.

Thank you for your advice, and thank you so much for making me feel valid... I cry a lot these last few months with all the stress and uncertainty with this condition I just snapped today, and just hearing that it's ok... makes me feel human.

Thank you so much.

- Joanna

I'm so familiar with how you're feeling. I was still working when I was going through the diagnostic process. I refused to go to Mayo for over six months. My local neurologist kept insisting but I just wanted everything to go away. One minute I was running and the next minute (so it felt) I was twisting my ankle just walking across the room. Living alone only made it worse because I had more time on my hands.

It's okay to vent, to cry, to deny, or to do any coping strategy you can do to get you through the day.

If you can make a plan to do something for yourself prior to August 2nd, it might help. I found that getting a massage or just planning a visit with someone would take my mind off it or, at least, make me focus on something else.

I've come to realize there are no rules in this ALS, motor neuron disease game. We just have to take one day at a time.

This is just my personal opinion and experience: I feel better when I let my feelings out. That might come in the form of writing, sending an email, talking to a friend or even shutting myself in my room and crying. It's all valid.

Until your appointment, know that you are among people who have been through what you're going through.

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
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 was so scared.

I'm also scared that my ALS will take advantage of this and progress further as I've already been fighting to keep my weight up and my meds on a timely manner.

I'm sorry to report this, I'm just sick and scared more than normal. How do you handle sickness and this? I was so weak I could almost not get out of bed on the 3rd bout of stomach pains.

- Joanna
Being sick is awful and I get significantly worse when sick ( any illness not just gi). an ALS specialist told me this is expected with any neurological condition I usually go back to baseline in a week or so but I do wonder always if I will.

a couple of thoughts prepare as much as you can so you have what you need when illness strikes You won’t have any spare energy to search out the thermometer or the ginger ale or whatever. I do also take note of what I can’t do as I find that will be something that will likely go with progression and figure out what to do.

cramps are worse when you are dehydrated.

did you have stomach flu or is it a med reaction?

feel better
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 of vomiting. I was hoping it would be a more mellow adjustment again, but if this is how it's going to make me feel until I adjust, I can't go weeks until my body adjusts.

the only other thought was food poisoning, I had some food from a local takeout restaurant and normally that goes over very well, but I can't rule it out either.

I'm glad to hear that I might come back up on my symptoms a bit as suddenly having to literally roll off my bed and barely able to get up to get to the toilet was really scary.
So sorry Joanna. Hope you feel much better today.
Restarting Trulicity after a month is not a recipe for GI health. Please stay ahead of the prior auths to make sure you don't have another gap. And if it's not the most comfortable therapy for your diabetes, there are certainly other options. Hope things settle down.

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 overall. I will do my best to stay on top of my pre-approvals for medications in the future, which is odd because this is the first time in almost 2 years that I was held up for that medication so I let my guard down.

I saw my speech pathologist today and, for now, we're holding off on additional appointments until our full ALS clinic follow-up in September as she has noted that there was some improvement in my speech today and I have full contact capability through telephone and online portal if things get worse or if I have concerns.

I'm just grateful for you all and your support, I'm sorry if I lean a bit hard at times, but I am learning and I will continue to do so.

- Joanna
I’m glad you are past some of the more distressing symptoms. Did you start on the Nuedexta? I’ve heard it helps with bulbar and I’ll be looking to get it soon
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 insurance to cover it. Thankfully I am getting 3-month supplies of everything from now on so this should become less of an issue for now. I'm hoping that it helps with some of the emotionality I have and that I am in that group in which it helps with speech and swallowing. Any additional time with my voice and being able to eat normally will make me happy.

I am also still in the process of getting a 2nd opinion at a full ALS clinic in Oregon here in a few weeks so hopefully, I can come back here and report some good news. If not, then I will at least know where I fully stand and I will be here with you all and hold my head up as high as I can and live the best life I can.

Thank you so much for your time and care.


That’s great news about the 3 month supply! I’m working that out at we speak because I only got 1 month of riluzole and not sure I’ll be able to pick the next one up myself. Hoping one of the caretakers the Air Force hires will be able to order my medicine. Not complaining about my progression because mom always taught me no point in crying over spilled milk, but just trying to prepare as best I can.

I also have my second opinion at houston Methodist, although it’s more to give the Air Force a warm and fuzzy more than it is for me. Don’t worry about replying on my posts, I know first hand how overwhelming this thing is, we are almost the same age as well.

Lots of great support on this site, I can’t imagine getting this disease 30 years ago!!

Was curious do you mainly have swallowing issues in back of throat with aspiration, or do you have some lower? I have a lot of difficulty in the lower esophagus pushing foods through, but lucky no aspiration so far.

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 occasionally choke on liquids and on really dry/crumbly foods. Since then though I have developed some tongue atrophy and dysphagia in speech as well as weakness in my arms/hands.

I had a LOT of anxiety in the early phases of this though and my swallowing has actually improved with nothing being aspired to date that has been noted by me or documented by doctors. I did actually choke a bit tonight when I was eating some rainbow sherbert ice cream and I have also had to cut out anything else spicy as that seems to cause my throat to trigger the most.

Thank you for being so candid, I will do my best as well since it seems like we're both on this train together.

- Joanna
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