Old 09-11-2018, 04:56 PM #1 (permalink)
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Default Limb onset with possible breathing problem?

my Dad had a hard night last night. He explained it to me as he woke up with twitching in his rib cage and back and shortly after had shortness of breathe. He says he feels today like it’s hard to take a full deep breathe. A side note is that twitching has always made him very nervous and makes him feel like the disease is progressing to where the twitching is occurring even though neurologists have confirmed that’s not the case.

He is limb onset and has no issue with swallowing or speaking. My question is do breathing problems come before other bulbar symptoms?

My thought is he’s anxious as this week he starts the AMX0035 trial and then leave for 3 weeks with my Mom to Hawaii. It sounds relaxing to be going away but I can tell he’s nervous to be away for so long as well as he can’t take the CBD oil that has been helping him manage his twitching.

Any insight fellow PALS or CALS might have would be much appreciated. Thank you!

Last edited by Cherise77 : 09-11-2018 at 05:07 PM Reason: Misspelled title
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Old 09-11-2018, 05:25 PM #2 (permalink)
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Default Re: Limp onset with possible breathing problem?

This could be from ALS. But given the rather abrupt onset of shortness of breath, I think itís important to rule out other causes such as pneumonia, pleurisy, blood clots, or a cardiac cause.

I would suggest starting with the primary care provider ASAP. They should listen to his lungs, get a chest X-ray, and perform other tests as indicated. If he is really struggling, then go to the hospital emergency department now.

As far as which comes first, breathing or bulbar problems, that varies from person to person.
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Old 09-11-2018, 06:08 PM #3 (permalink)
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Default Re: Limp onset with possible breathing problem?

Definitely have his breathing tested so you know what is going on - Karen lists some important things to rule out.

Breathing issues are quite separate from bulbar - swallowing and speech. One of the hard things about this disease is there is no set pattern. Any nerve can be next in line for any particular person. But ruling out other causes of breathing issues is the first step. Please let us know how you go.
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Old 09-11-2018, 06:14 PM #4 (permalink)
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Default Re: Limb onset with possible breathing problem?

Cherise,

I couldn't add to what Karen has said but wondering why he can't take the CBD oil on his trip? My understanding is if the vial is labeled for no/low THC and he has documentation with him of medical necessity that there should be no problem so long as he puts the oil in his carryon/toiletries bag and it's don't ask/don't tell. TSA does not screen for CBD specifically.
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Old 09-11-2018, 09:07 PM #5 (permalink)
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Default Re: Limp onset with possible breathing problem?

Thanks everyone for your input. He had an appt with his family doctor this afternoon and it looks like his breathing is okay. Still not sure what the issue is but I guess he’ll have to wait for his appt at ALS in October.

In regards to the CBD oil, I thought the same thing. If it’s for medical use how can they expect you to travel without it. When my parents asked the medical clinic, Greenleaf, that they get the CBD oil from they said not to bring to the US. They had to sign a contract when they signed up for the program and it says into not to take across the border.
Seems not right to me as it’s being used as a medication to treat my Dad’s symptoms and it’s pure CBD oil, no THC.
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Old 09-11-2018, 09:15 PM #6 (permalink)
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Default Re: Limp onset with possible breathing problem?

Cherise, is your dad maybe feeling a bit of anxiety? Being without something he feels helps him, plus going on a big vacation after a recent diagnosis could be pretty overwhelming.

He could have some early progression to intercostal muscles- which could cause a feeling of restriction or labour when breathing too?
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Old 09-11-2018, 10:09 PM #7 (permalink)
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Default Re: Limp onset with possible breathing problem?

As to the Greenleaf contract, they want to cover themselves legally, is all. Another DADT situation where I would put the vial in his carry-on, and have the documentation in a back pocket, so to speak.

If there is time and he'd feel better about it, you can also infuse it in some mints like Altoids.

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Old 09-11-2018, 11:01 PM #8 (permalink)
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Default Re: Limb onset with possible breathing problem?

Does his GP understand what breathing issues happen in ALS? Most GP's have never dealt with this disease at all.

You can request a clinic visit if there are concerns as this is a real quality of life issue.

I second that anxiety could be playing a role too however. But then this is why it is worthing finding the cause, then the appropriate help can be given.

So many things to take in I know.
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Old 09-11-2018, 11:48 PM #9 (permalink)
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Default Re: Limp onset with possible breathing problem?

Any cannabis that has less than 1% thc is considered food and is covered under the FDA. If not just because it is illegal in Hawaii doesn't mean it isn't available, you may have to look harder. Where do you think Maui Wowie comes from? With this diagnosis I really don't pay a lot of attention to rules.
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Old 09-12-2018, 11:58 AM #10 (permalink)
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Default Re: Limp onset with possible breathing problem?

anxiety definitely increases my own sense of shortness of breath, I think with als it's tricky because you often legitimately have decreased pulmonary function, even if it's not reached a dangerous level, and then you add any anxiety and it can be hard to parse out.

If he is nervous about starting AMX0035 let me tell you I completed the entire trial and am now several months into the 1 year open label phase. If taken orally it does taste horrible, BUT, I truly believe the drug is helping me. I'm going to be really, really, really sad when the open label phase is over. I wish I could take this drug for the rest of my life. So I'd like to encourage your Dad to be excited rather than nervous about starting the trial! The ratio of drug to placebo is 2:1 so odds are in his favor of getting the real thing, and then everyone gets the real thing for a whole year in the open label phase.
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Old 09-14-2018, 06:16 PM #11 (permalink)
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Default Re: Limp onset with possible breathing problem?

Thanks for the positive feedback regarding the trial Kristina1! It definitely made my Dad feel much better and he just completed his first dose and is sounding really optimistic. We hope for all PALS that this drug will have great success and be fast tracked to get to those who need it soon.
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Old 09-14-2018, 07:40 PM #12 (permalink)
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Default Re: Limp onset with possible breathing problem?

I'm so glad to hear it Cherise! I hope the same!
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Old 09-15-2018, 01:47 AM #13 (permalink)
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Default Re: Limp onset with possible breathing problem?

I spoke to your Dad the other day but I don't think I was clear. Because it helps, I would stick it in my carry-on and not give it a thought. It is not a liquid or gel and it will look like deodorant on the x-ray. I don't remember the last time anyone dug around through my bag, especially not with Nexus. And if they found it, he could play the ALS card, and like Vincent says it is less than 1% THC so I doubt anyone would care. He might be able to find some there too. It is Maui!

And as it was stated, diaphragm muscles are innervated through the spine (not bulbar.) I have had some very intermittent fasiculations in my diaphragm but my FCV is still 148%.
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