Newly diagnosed on 5/10/2022

[NekoiStar]

Thank you so much...

I'm just so overwhelmed... I've lost a lot of weight in the last month (228 to 214) due to me not being able to swallow so well, and my anxiety making it that much harder (I think I'm going to choke... so I fear eating) and on top of my that depression just keeps me so overly focused on what needs to be done... and emotions... and crying... so I just... forget to eat somedays.

I'm doing better today though, I needed to hear a lot of these words, I am younger, so hopefully, I'll last longer, and maybe this thing will just... take some... but not everything from me right away. I got some High-Calorie Boost drinks so if I'm having a rough day of eating I can just drink one of those down to supplement what I've eaten so far in the day and I'm trying to focus my groceries on things that I can eat. The biggest thing is to try to stay calm long enough to actually eat as being overly anxious makes trying to swallow 10x worse.

I had the blood draw done today to see if this is genetic ALS and they had to poke me 4 times to get the blood they needed. My arms are notorious for not wanting to give a good vein to draw from, but I felt so bad... because they had to get like 2 more people to help them and I just broke down crying because I don't want to be a hassle for anyone. I think this is where a lot of my darker thoughts come from... is that I don't want to be an inconvenience to those I love and those who are trying to help... even when it's not my fault.

I feel more pain in my heart right now than I feel in my body and mind, when I cry it's my heart that hurts the most. I keep thinking that maybe I should just go into a group home, but that also makes me sad because I need that connection to someone I love to keep me going.

This is so difficult to process.

- Joanna

 

[wishmobbing]

It's a lot to process. Writing down your thoughts like you do, is a good way I think. I feel for you.
Never worry about health care professionals having trouble drawing blood or doing something else with/for you, that's part of their job. Your veins can play hard to get as much as they want, you are never a hassle, you're a patient and a person and they earn their living because you're there.

 

[Nikki J]

It occurs to me there has been no discussion of nuedexta. Nuedexta has an indication for pseudobulbar affect a common issue in ALS. There are anecdotal reports of transient improvement in bulbar symptoms ( usually about 6 months) and some study results supporting this. It usually requires a PA saying you have PBA but I know neurologists at my clinic stretch a point slightly if needed to get it for bulbar patients. If you do have pba symptoms it can really help

 

[NekoiStar]

Thank you for the Recommendation Nikki,

I've looked into Nuedexta before, but since I don't seem to have the uncontrollable crying/laughter I never looked into it any further. I wasn't aware that it can help somewhat (sometimes) with speech and swallowing... even if it's just for a short time, I would like to put off having to go part/full-time PEG feeding. I am looking into getting one installed once I'm back from the UK, so I have it if things get dicey quickly.

I did look up medication complications... and it does have a potential complication with my Venlafaxine, which I started up about a month and a half ago. It also seems to have an interaction with my Metformin, but that can be managed by just watching my blood sugars and making sure they don't dip too low.

I'll ask about this ASAP to see what option I can have with this.

Thank you so much!

 

[Firefighter58]

Slow down there Joanna, I have had Bulbar for years now and I still live a happy fulfilling life. I still go up to our cottage and spend time with our grandkids which I enjoy very much. I am confined to a wheelchair now and I can not speak but I communicate with an app on my iPad that works very well. I always look forward to the next day and I know that nothing will improve but so be it, life goes on.
I'm trying to encourage you not to condemn you, you still have a lot of life yet to live. I had a very active life before ALS and I still have one but only different now, my progression is very slow which I am thankful for and yours maybe to, we will have to wait and see. Good luck Joanna, Iam here to talk if you so desire.

Al

 

[NekoiStar]

Firefighter,

Thank you so much for your kind words. I've been so scared and everyone here has been so kind to me. I'm only 37 and I want to be around a lot longer, I want to be able to see my friends and the world for as long as I can. I don't want to just give up and die, I want to fight and be around to see more days and enjoy life in any way I can.

I just wish my doctors would hurry up and get my meds pushed over to my insurance so they can get moving on their review so I can get them started ASAP... I want to slow this thing down so I can have that time.

Thank you so much, I have hope in my heart and genuine tears of joy and happiness right now.

- Joanna

 

[lisa g]

Joanna take time to digest everything and don't beat yourself up. No one likes the idea of having this disease but we just do what we have to. I'm glad you'll be looking into having a peg placed that will ease up any fear of choking while eating. I had mine placed in April and I have to say even though I resisted the idea of having one, it was the best decision I've made it takes away the stress at mealtimes.

 

[NekoiStar]

Hello again,

I'm beginning to doubt the care I'm receiving at my hospital. about 7 weeks ago the doctors suspected it was ALS, 5 weeks ago the 1st EMG on my left arm/back was suspected again, then almost 2 weeks ago it was confirmed with a more thorough EMG and various bloodwork/MRI coming back negative for other possibilities.

However, through all of this time... there has been no prescription for medication. I have made multiple phone calls every day for almost 2 weeks now requesting medication. Neither the doctor nor his "Caseworking" nurse has bothered to call me back or make any movement on medication (no claims to my insurance, nor pharmacy).

I am going through 2ndMD for a second look through on my tests/scans to see what they think, and I am going to head to another state for a full second opinion as soon as I can get the doctors actually to talk to me again for a referral. This is incredibly frustrating and anxiety-inducing as well.

Any thoughts on this kind of behavior out of your ALS "Team"? Is this normal?

Thank you so much for your time and kindness.

- Joanna

 

[lgelb]

Again, we always recommend a second opinion with an actual ALS clinic -- presume you went to the Billings Clinic. Technically there is a clinic in Great Falls, but it doesn't look like all that. Providence Spokane Neuroscience Institute’s ALS clinic is probably the closest past that.

 

[NekoiStar]

Had my 2nd ALS clinic today. It went over pretty well, starting a BiPAP due to slightly lower lung capacity so I can have time to adjust for if/when I need it. My speech and swallowing are about the same, even slightly improved with my anxiety reigned in a bit more. My right arm is now starting to get weaker to mirror my left hand, still usable, but easily tired and painful if overused. Riluzole and Neudexta have been ordered for ALS and discussing having a PEG installed with the surgeons calling me here in the next week to schedule it out. Finally, a second opinion referral has been sent out to an ALS center in Oregon (I have family there who will let me stay with them), odds are it is what it is, but the second pair of eyes never hurts and is encouraged.

I also got a social care worker advocate to help me with my disability claims and SSDI so hopefully this will all be wrapped up sooner than later and from there we just act in accordance with how my ALS progresses.

A lot of movement happened at once today, but I feel a lot better knowing that I have a good support structure with my doctors, family, and friends.

Now that this is out of the way, I can begin to make the needed prep to get my butt to the United Kingdom and be with my love.

Thank you so much for all of your love and support. My outlook on this whole thing has been so radically changed in a short time because of all of you.

- Joanna

 

[KimT]

It sounds like you've made a lot of progress and have people/doctors/others who will help you as needed.

Best wishes, Joanna. I hope your trip to UK is a great one.

 

[affected]

Wow that is a lot in one day - I'm so glad to hear it. Honestly that first month after diagnosis is really a dark place, but kudos to you also for working through it and reaching out for support.

 

[lynnbr2]

contact the ALS Association local care services is beneficial to find a multidisciplinary team @ an ALS Clinic. You should look into Voice Banking right away.
I was unable to get supplemental insurance, so I used COBRA for my Rx and backup insurance as long as I could.

 

[NekoiStar]

Hello again,

I'm just wanting to give a bit of a checkup on where I'm at right now.

I'm officially starting Riluzole this week and, pending approval, neudexta next week. My progression seems to be creeping along, my right arm is slowly getting weaker to match my left, although both started to cramp up around the same time back in March of this year. My legs seem to be fine still at this time and my EMG only showed some very mild neuropathy which is in line with my type 2 diabetes which I've been battling for the last 5 years. My speech is about the same, according to my speech therapist I'm clear enough to understand, but I speak a lot more slowly (around 50% of normal speed) and I tend to enunciate a lot (I blame my theater days, enunciation is key to understanding). My FVC is around 68-70% for the last 2 months and we're looking into getting me onto a bipap here soon. During my swallowing tests, there is some mild residue of more granular food types, but everything else seems to go down easily, I do have tongue atrophy, but no spasms yet.

I did have a question... and I know it may be personal, but I'm not sure if I really do have bulbar onset if it was limb onset or both? I know I had slower speech and swallowing issues at first, but for years, I've had mild carpal tunnel and twitching in my arms and sides. I know that everyone's ALS progression is different, but mine seems to be so weird... it's like it's... peeling away my functions one degree at a time in several places instead of just one or two. I wake up some days and my arms/voice/hands feel... good? I wouldn't say strong, but stronger and more functional and get worse as I use them. I just feel... so slow, like everything I do involving my speech, or arms/hands just feels way slower.

Any insights on bulbar ALS at all?

Thank you so much.

 

[affected]

Hey Nekoi I don't think it really matters much as ALS ends up affecting all or most areas of the body.
Bulbar onset ALS means the first affected area was the bulbar region. It doesn't mean you won't then start losing function and progressing in other areas, and the order can vary greatly from person to person. It is perfectly usual however to have several areas of the body declining at the same time as ALS is characterised by being a widespread progressive disease.

I would encourage you to have them get you on the bipap asap as we know that the more you provide support to your breathing muscles, the less hard they work, and that can mean the slower the progression. No guarantees, but it can give you better quality of life for longer.