Unread 07-04-2009, 01:20 PM #1 (permalink)
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Default Breathing Difficulty / Shortness of Breath

I was diagnosed with PLS about 2 years ago, first symptoms 12/04. In scanning all of the threads on this site I do not see any mention of breathing difficulty / shortness of breath. I am finding this to be a constantly progressive issue. Has anyone else experienced these symptoms?
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Unread 07-05-2009, 04:12 AM #2 (permalink)
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Look for threads on the Bipap machine and its purpose.... the eventual need for a trach... and for subjects pertaining to restrictions because of weakness due to lack of breath.
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Unread 07-05-2009, 07:32 PM #3 (permalink)
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Default Breathing Difficulty / Shortness of Breath

Thanks Marjorie,
There is certainly a great deal of info out there. It gives me a good direction for some research. Most of the entries seem to be from people with ALS. Do you (or anyone) have any idea how common these symptoms are with a diagnosed of PLS? Thanks ..........
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Unread 07-05-2009, 08:12 PM #4 (permalink)
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Rayboo,

How long has it been since you last had an EMG? I'm wondering if you might be developing LMN troubles (something no PLS'er wants to hear, I know).

If memory serves me right, I've read of cases on another werbsite of some PLSers developing breathing issues.

At any rate, I'd be having that looked into with your neuro or GP.

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Last edited by Zaphoon : 07-05-2009 at 08:13 PM Reason: added a word
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Unread 07-06-2009, 07:21 AM #5 (permalink)
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hi.
i have pls (10yrs)and breathing problems that have steadily progressed for a few years now.

the info on reputable sites like emedicine,ninds ect say breathing issues can develop like in als later on in the course of the desease.

my main issue and most worrying is not being able to breathe well when laying down,this has resulted in a increase of pillows to prop myself up over the last few years (now 5 pillows).
i found i was waking up choking or unable to breathe,had a few scarey times were i felt i had stopped breathing.
i dont think its sleep apnea,i am slim and dont snore lol.

i do have blood pressure problems during the daytime,this can result in palpitations and shortness of breath plus i have blackouts sometimes.

you should really see your gp,its probable there is a unrelated cause that can be treated.
we can have many things wrong that are unrelated to the mnd. at the clinic i go to they check for other causes before chalking it up to a pls related symptom.
hope you get it sorted and things improve
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Unread 07-06-2009, 03:41 PM #6 (permalink)
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Default short of breath

I was DX a month ago. I have been having problems with weakness for 1.5 years. Now, its
swallowing and twitching.

Breathing has been an issue, I get shortness of breath. I have had memory problem and cognitive problems for the last 6 months. I have become a wackadoo! I often wonder if it would be from lack of oxygen intake while I sleep, because of chest weakness.

I am in the process of getting testing done.. I have had three tubes put in my nose, that went to my stomach and throat. I feel like a lab rat!

I was just wondering if you have any memory problems?


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Unread 07-06-2009, 04:22 PM #7 (permalink)
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Memory problems are usually not associated with breathing issues. Headaches are a warning sign and are caused by high CO2 levels.

FLD (Frontal Lob Dementia) is something that affects a small percentage of PALS and could be a possibility. .
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Unread 07-06-2009, 09:58 PM #8 (permalink)
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Default Breathing Difficulty / Shortness of Breath

Thanks to all of you for your valuable input!

Zaphoon: I haven't had an EMG in about a year. I will have my neuro do that unless the VA does the test during my exam.

Caroline: I use a BiPap at night. Stopping breathing while asleep is a sign of Sleep Apnea. I used to scare my wife to death when she observed me stopping to breathe. The machine has enabled me to reduce from 6 pillows to 2.

Ice Cream Lady: My short term is totally "wackadoo". My long term is fantastic. I write off the explanation as to the fact that I am 65.

I spoke with my neuro and he feels that y diaphragm is weakening and that would explain the difficulty in breathing and shortness of breath. He suggested that I use the BiPap when possible during the day. I am concerned that this could be a sign of LMN. I'll wait and see the results of the EMG. (with baited "breath")

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Unread 07-10-2009, 04:52 PM #9 (permalink)
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I also have trouble breathing. At first it was just at night. I was diagnosed with Sleep Apnea in 2005. PLS in 11/09. I also used pillows to help. I have tred a CPAP but could not tolerate it. Sounds like I may need to check into a BiPap.
Todat I fell asleep sitting in a recliner and woke myself up gasping for air. It is a very scary feeling. I wonder if the meds have anything to do with this?

Anyway keep hoping for a cure and make each day the best you can!
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Unread 07-10-2009, 05:06 PM #10 (permalink)
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Rodstew ... there are some that definitely suppress breathing, such as Ambien and Valium. Those are the only ones I know about specifically, as I've been told that by doctors. Check with your pharmacist ... doctors aren't always up-to-date on drugs' side effects or interactions.
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Unread 07-10-2009, 05:10 PM #11 (permalink)
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Hi Ray,
Maybe you should have a FVC test done, it is relatively quick, and maybe you can get in quick to get that completed. I have heard of pls'ers, and UMN dominant ALS people talk about breathing issues for sure.
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Unread 07-12-2009, 08:44 PM #12 (permalink)
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Hi Rayboo,

My husband was diagnosed with PLS a yar ago but it took a long time for the diagnosis to be made. It started with his speech and he has breathing problems as you do that are progressing.

Elevating his head with pillows has resulted in major improvement as Olly mentioned. We are scheduled to go to the ALS clinic in August and look forward to their assessment and the potential need for Bi-pap.

The best to you and evryone. Thank God for the forum. This is such a struggle.

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Unread 08-15-2009, 01:39 PM #13 (permalink)
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I was diagnosed with PLS in 2007. Just in the past couple of months I've noticed that I'm having difficulty breathing. I yawn very frequently during the day. At first I thought it was just lack of sleep, but now I'm suspicious that I may just not be getting enough oxygen. I believe that my diaphram is weakening which could be the cause of breathing difficulty. I'm going to ask my neurologist at my next visit.
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Unread 08-15-2009, 02:04 PM #14 (permalink)
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You are correct in saying your diaphragm is weakening and causing breathing trouble, that is exactly what happens. Also, the yawning is a symptom of the disease and has nothing to do with lack of sleep or not getting enough air.
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Unread 08-15-2009, 03:05 PM #15 (permalink)
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hi therock (therock as in the wrestler?)

if you look further up the thread there is my reply on this subject.
increased tiredness during the day can be a symptom of not getting enough oxygen/good quality sleep.
also i find and many others with bulbar involvement we tend to yawn more even when were not tired,you could say its an emotional liabilty symptom.

definatly get it checked with your neuro.
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