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    • #15596
      Giselle Vargas
      Participant

      My husband’s first and most salient symptom has been shortness of breath due to weakening diaphragm and torso muscles. Has anyone else had a similar experience? Everyone else seems to be bulbar onset or limb onset. I know there is a small segment that is respiratory onset but I have never seen anyone post about this. Thank you!

    • #15693
      Diana Hosner
      Participant

      My husband sleeps in his lazy boy chair because when he lays down he says his breath gets shallow. Two days ago they did a sleep study. We don’t have the results yet. My husband started in January with shortness of breath and voice slurring.

    • #15712
      Giselle Vargas
      Participant

      Hi Diana,

      I hope that the results of the sleep study are helpful. My husband sleeps with a non invasive ventilator which allows him breathe while lying down. He does breathing exercises with a spirometer and stacked breathing. I’m not really sure if it helps or not. If you don’t mind my asking, does your husband have a hoarse voice or does he slur his words?

       

    • #15713
      Dean
      Participant

      Hello Giselle,

      My first symptoms of ALS were shortness of breath like your husband.  I kept thinking my struggles with working out (jogging, elliptical, HIIT training) were due to me getting older.  I was also noticing facilitations in both of my calf muscles. By the spring or early summer of 2019 my breathing issues were getting worse until I finally ended up in the ER on 11/19.  That’s when I received a diagnoses of ALS.  There are no words to explain the blow that diagnoses took on me and my family.  I started on Riluzole by 12/19 and have noticed a somewhat slow but steady decline in my abilities.  I also started on the Trilogy breathing machine for at night lying down and resting during the day.  It’s been a long and difficult road dealing with all of the ALS symptoms along with COVID-19 locking everyone down in my state.

      I have also had the issue with my voice being slurred and raspy.  I’m still able to walk, use my arms, drive, etc.

    • #15727
      Giselle Vargas
      Participant

      Hi Dean,

      Your experience sounds so similar to my husband Sergio’s! Very recently he was having trouble clearing his throat so we got a cough assist device which is very helpful. The therapist said in addition to clearing it helps inflate the lungs and keep them in better shape. May be helpful for you? I’m curious… Did your doctor use the words ‘respiratory onset’ with you? Our MD hasn’t … I found that term online… but it’s definitely a different pattern than most. We certainly understand how Distressing this whole experience has been especially with Covid adding a whole new layer of anxiety to the situation. We are on Long Island NY and went through a very rough patch with Covid back in March/ April. I am terrified of the virus since Sergio’s breathing is already compromised. Hang in there… so many promising treatments are just around the corner 🙏 We are both sending you and your family a big virtual hug of solidarity and support!!

      Giselle

       

    • #15739
      Tim Burr
      Participant

      Hi all,

      I started with difficulty lifting things in front of me. Never a problem before. Had some PT, but one of exercises called for me to lie on my back on the equivalent of a pool noodle. I realized that my chest was not lifting when I inhaled. About two months later in September 2019, I walked to work because it was raining (I have been bicycling to work for 40 years, but not in the rain). While my walk was only seven blocks, I had to stop three times to catch my breath. That started my tour of doctors. i also was having difficulty sleeping, waking about every hour to go to the bathroom. Then i would pant in the morning when I came down to breakfast—and sometimes fall asleep during breakfast and at work. Finally in January 2020 I was diagnosed with ALS and got a BiPAP breathing assist machine. Once I was using it through the night, I slept fully. A great relief. Just make sure you have someone who will come to you to make sure you have the right masks (I use two after going through a number to find the most comfortable) and the air flow is adjusted correctly. The respiratory therapist needs to see how you sleep to make sure everything is set up right and to explain what you need to do to make the most of the equipment and to be comfortable. That is where the various masks come into play. I use the BiPAP occasionally during the day as needed, usually during a nap.

      The only drawback to the BiPAP is that my nose runs like a faucet for about an hour after I get up. If anyone has an answer to that, I would love to hear it.

      Tim

    • #15743
      Susiebow
      Participant

      Greetings,

      I was diagnosed August 2017 with Bulbar onset.  Had sought a diagnosis for both breathing and speaking issues.  Was immediately given a bipap, which I used faithfully at night for the first year.  It was a great help in sleeping through the night.  Year two brought a gradual decline in breathing, and by year three I was issued a trilogy ventilator which I use now over 20 hours per day.   My voice is weak but still able to be understood.  I am still fully mobile, but my neck muscles have weakened to the point that holding my head up is increasingly difficult.  Overall weakness and very low energy are my other challenges, which I attribute to poor breathing.  I can still talk, but lack of breath and wearing a mask all the time severely limits my ability to communicate.  I do have a cough assist, but as of now, don’t suffer much from excess phlegm or congestion.  Although, Tim, I do have a drippy nose upon waking.

      Best of luck to all,

      Susan

    • #15745
      Giselle Vargas
      Participant

      Hi Susie,

      Thank you for responding! It sounds like you are a very strong woman and really hanging in there! My husband’s symptoms do sound similar to yours. Neck muscles are weak. He has a very good neck support he bought on Amazon…brand name is VIVE. I am curious as to what kind of speech problems you have. Do you slur your words or is your voice increasingly low and raspy. I ask bc I have read that slurring is upper motor neuron issue and hoarseness is lower motor neuron. Just curious, I don’t want to be intrusive. I am sending you a big virtual hug! Stay strong !!

      Giselle

    • #15750
      Venu Vasala
      Participant

      I was diagnosed with Bulbar onset one year back. Since few weeks, I used to wake up with difficulty in breathing. Thereafter I started doing these two Yoga techniques which are helpful in controlling inhale/exhale:

      1. PRANAYAMA : inhaling through one nostril (closing the other with thumb/little finger) filling the lungs and slowly exhaling through the other nostril (after closing the 1st nostril). Then repeating the same with 2nd nostril.
      2. KAPAL BHATTI: The process of quick exhale, while pulling-in the stomach and releasing.

      I believe doing these two simple techniques for about 10 to 15 minutes in morning & night will help in strengthening the diaphragm. If anyone is interested, it’s best to take guidance from an experienced Yoga teacher.

      Also practicing a meditation method known as “ANA-PANA” before going to sleep, will enable better sleep.

      • This reply was modified 1 month, 1 week ago by Venu Vasala.
    • #15754
      Dagmar
      Keymaster

      Those are excellent suggestions Venu – – we can learn much from the breathwork techniques taught in Yoga.

    • #15798
      Susiebow
      Participant

      Hi Giselle,

      I would say my speech is more low and raspy, rather than slurring.  Everyone in my family can understand me except my husband who is hard of hearing and isn’t interested in hearing aids.  So I really have to enunciate and speak slowly for him to get what I’m saying.  Complicating speech even more is wearing a face mask most of the day.  I know some have mastered speaking while wearing a mask that only covers the nose, but I struggle with those.  So I remove the mask to speak short sentences.  Long conversations are not possible. Thanks for the tip on the neck support.  I will definitely check that out.  I have two, one simple foam given to me by the OT, the other a Vista, neither one very helpful.  Plus wearing the neck brace and the face mascot the same time is just a bit too much to handle!!

      Good luck to your husband,

      Susie

    • #15799
      Dagmar
      Keymaster
    • #15806
      Elizabeth Benz
      Participant

      Another place you might want to post is on the ALS Forum for Women (Lou Gehrig’s disease) on Facebook.  Both CALS and PALS are active there

    • #15910
      Mimi
      Participant

      Hi,

      I m so sorry to disturb you. I want you to be sur I didnt write for pleasure.
      please excuse me. I feel in a desperate situation. I am Swiss and my English is not very good. But I will try to explain my situation to you. I think you are in a good position to know how hard it is to be sick and unanswered.

      I m a 26yo (soon 27) swiss girl. I m single and live alone. I m a nurse. I was also an athlete, I m a boxer and I made sevral fights. I was in a perfect shape and I never had any health issue before (mental or physic)

      Until early march I m struggling with weird symptoms.

      It’s begin in early march. During a boxing training I feel my arms were very tired, I thought it was a bad training day. It happen sometimes. Muscles aches last for one week and I also have low back pain and shoulder/neck pain. Like it s contracted, cramped. Few day later I have shortness of breath it s seems to happen randomly (no cought, no fever). I tought I had the covid19 but the test came back negativ. I continue working thinking I had a flu or a cold. Pain and random shortness of breath continue. I go back to my general Dr, he made the current blod test and little more (lyme and other current infectious diceases all came back negativ). Fasciculations appeared, I don t have much and they don t last long but they appear everywhere on my body (legs, arms,abs,rib cage, tongue, face). I also have bad cramps every where (same places as the fasciculations). I also feel my muscles are stiff. And also experience constipation from early march. I feel also a lot of muscle fatigue and also general severe fatigue. Like I need to sleep but I can t have a restfull sleep.
      From early june sorthness of breath increase and I can t sleep because I feel I can t breath and it s wake me up.
      I went to the ER 3times because I felt bad and I want an answer to my problem, I started to be anxious there is something seriously wrong with me. They made chest Xray, all the cardio test,… everything is normal.
      The tird time I went to the ER the keep me in hospital for one week, make tone of blood test, pulmonary fonctions (little bit low but they don t seems to be affraid of it), EMG (arms and legs), brain MRI. They conclude: anxiety

      From their I take an appointment with a psychiatrist, I take med against anxiety and an antidepressent. I try relaxation, breathing exercises,… (they make me feeling worse because I m feeling like I choke)

      Everything go worse and worse and I m hopless.

      Neuro conclude: no clinical weakness, no atrophy, normal reflexes,… despite I feel weaker and weaker and so tired. Everything is harder, breath went worse. Cramps are worse specially in low rib cage, abs and throat. But also in legs.

      I think my case is so atypical because I m so young and also maybe because respiratory onset is even more rare.

      I can t work any more, I move to my mother.

      Please can you share your experience with me. If you have any suggestions I m open minded.

      Thank you so much for your answer. Be sur my intentions aren t to be rude or unpolite.

      be sure that I send you all my support and all my thoughts.

      Camille

    • #15912
      Dagmar
      Keymaster

      Hello Mimi – – Thank you for sharing what your symptoms are and your challenges in being diagnosed.

      I suggest you read the posts made by our members in this general forum category: Diagnosis and Other Information. You may find those who have described symptoms similar to your own. Then, do look at our category: Living with ALS, as there will be many shared tips and good information about day-to-day living.

      Feel free to post questions or your updates. We are a friendly, supportive group 🙂

    • #15921
      Ron Scott
      Participant

      My symptoms began in January 2017 while on vacation I had difficulty breathing when I went snorkeling with my wife. I am scuba certified and open water rescue certified therefore I was a little freaked out because I couldn’t breathe while snorkeling. Well that was the beginning of my journey to find out what was wrong. Over the next 18 months I went through vigorous testing from my heart having an angiogram and probably every respiratory test known. I had an episode at work where i could hardly breathe so I went to the hospital where they did a sniff test, nuclear imaging, a brain MRI and tons of other workups- They found nothing wrong with my lungs or anything else for that matter.. I went to a neurosurgeon that did an MRI on my neck and realized that I had severe bone spurs that needed to be repaired. I was also losing strength in my hands, I couldn’t open a package of crackers. Therefore everyone thought that the bone spurs were blocking my spinal fluid and affecting my frantic nerve along with the nerves that go to my hands. The surgeon sent me to a neurologist to have an EMG, which I did and was made aware that I had fasciculations and no mention of ALS. On October 1, 2018 I went into a 4 hour surgery to repair my neck. The doctor kept me in the hospital and on the 3rd day I lost the use of my right arm and on the 12th day I lost the use of my left arm. I was sent to inpatient rehab and ultimately stayed in the hospital a total of 26 days. I was prescribed to go on electro muscle therapy along with a daily use of what they call a bone stimulator. Upon a visit to my Neurologist/doctor in early November he noticed I was having severe fasciculations In my legs and that I should get that checked out because it could be ALS. 3 weeks later a neurologist informed me that he was 80% sure that I had ALS and that I need further testing. After 2 more doctors 1 of which is a world-renowned MD and ALS scientist at Houston Methodist Hospital named Dr. Stanley Appel. He and his team are remarkable people and really helped me focus on keeping a good/positive attitude because that will determine how long I live. Since my diagnosis I have survived because of the trilogy noninvasive ventilator which I have one On my bedside and one on my motorized wheelchair. Dr. Appel said I could live in the 20 years with this machine. Since my diagnosis my breathing has gotten worse And I have pretty much lost the use of my hands and arms and am pretty much bound to my wheelchair when I’m not in bed. I have been informed that the worst thing that I could’ve done was to have the surgery.I can walk maybe 20 feet but I’m so out of breath have to get back in my chair with the ventilator. I have not seen any degradation in my speech or my ability to eat (with assistance of course) and am praying for 1 of the various trials to be successful at slowing or stopping this vicious disease. I am happy to further discuss the with anyone that is interested.

    • #15925
      Amanda
      Keymaster

      @Ron Scott,

      Thank you for sharing your experience in detail. All to often pALS have a long road to a proper diagnoses. Please continue to share because I think your attitude is inspiring.

      Amanda

    • #15990
      Gideon
      Participant

      My wife Neck muscles are weak. I call Appel Clinic Dr Stanley Appel.  MD and ALS scientist at Houston Methodist Hospital .   Thy recommended “Headmaster Collar ” by Symmetric Designs Ltd.( bought on Amazon) You can adjust the distance between the chest and the neck up to 3″.With additional part to support the back of the neck( metal plate).  Unfortunately my wife developed allergic reaction from the material .

      After a long research i did find one “AEVO” travel pillow on Amazon this one hold my wife neck and support  her  back of neck ,I recommend it and the price is right about $19.99.My wife  lost the use of her  hands and arms .She on trilogy noninvasive ventilation and Oxygen which help her at night and  day. P.S Unfortunately   to my saddest, Dr Appel is no longer at Appel Clinic after is wife pass away this year .He only do research on ALS.

    • #16040
      Stephanie
      Participant

      My father was diagnosed at the Mayo Clinic with late-stage, respiratory onset ALS three weeks ago (July 2020).  We’ve been searching for answers, seeing many doctors, and having numerous diagnostic appointments for 3 years trying to understand the cause of his rapidly declining health (breathing problems, significant weight loss, weakness in his hands/limbs, headaches, passing out).  I’m sharing this in the event what we’ve experienced or learn can help someone else.  His situation was complicated by extensive nerve damage to C5 in his neck.  He has bilateral elevated and weakened diaphragm which doctors thought was due to phrenic nerve damage.  They were confused because the phrenic nerve comes out of C3/4/5 and if one area is damaged, the others are supposed to pick up the load.  As it turns out the damage to his diaphragm was due to ALS and the other neurological issues made it all the more difficult to diagnose.  For those who are suffering from breathing problems, we had a “standing and lying Sniff test” that was very valuable to know how functional his diaphragm is.  We had multiple EMR nerve conduction tests, including at Mayo, that didn’t spot ALS.  The key symptom that we didn’t know to look for which convinced the neurologist at Mayo that he has ALS is extensive nerve fasciculations (muscle twitching) which others reported.  The Mayo neurologist said that 5% of all ALS cases are respiratory onset and that they’re difficult diagnose.  My dad’s been using a BiPAP machine at night since August 2019.  Over the past few months he’s advanced to needing extensive breathing assistance the during the day, preferably on his BiPAP but we’ve also been fortunate to have a ResMed Astral 150 that’s portable.  We’re lucky that he’s still able to walk within the house but it’s increasingly exhausting for him to do so.

      I look forward to watching this thread for information and contributing if there is something I/we can offer.

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