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Laurie H.

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Has anyone experienced this? It is getting harder and harder for me to sleep at night. Even though I prop myself up in bed with several pillows (I am almost in sitting position), my breathing muscles do not seem to work right. It almost feels as if my lungs are going to sleep. I get a strange, dizzy sensation and then sometimes my breathing stops. It happens at night usually, but has started happening during the day too. I cannot lie on my back or on my left side. I also have muscle twitches throughout my body (especially torso), bilateral clonus, slightly upward moving big toe, and hyperreflexia. My lungs and chest have burning pain. I used to be able to run 3 miles, 3 times per week. Now I get winded just climbing the stairs. My 2005 pulmonary function test showed an FVC of 90% predicted value. My November 2009 pulmonary function test stowed an FVC of 68%. Laurie H.
 

sadiemae

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My husband had the same thing. He got a BiPap, and he also takes Prilosec, which helps with the burning, that may be acid. His FVC was 68% when first diagnosed, then 62% a month later, then he got the BiPap, and though he doesnt wear it all nite, his sleeping is getting easier. Lori
 

Laurie H.

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Thank you for responding. How long did it take your husband to get diagnosed? What were his first symptoms? I have not been diagnosed but am seeing a neurologist and pulmonologist. So far, they have given me no clear answers as to the cause of my clonus, hyperrelexia, breathing problems, tingling, etc. Does your husband's breathing ever feel like it stops? Does he get a dizzy feeling when he lies down? Did the BiPAP seem to help him at night and during the day? I truly appreciate your insights and help. Laurie H.
 

sadiemae

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Laurie, I am LORI We took him to emergency room on 9-3-09, after I figured out what was wrong with him. Symptoms had been going on for at least 2 years, we attributed it to his hard work, and other things. 20 minutes into the exam by the neuro at the ER, I told her I thought he had ALS, and she confirmed it. We had no insurance so they admitted him for tests, we were there from 9-03 to 9-09. His first symptoms(looking back now) were extreme charlie horses in his legs. His shoulder really started hurting, his voice started to slur, almost as if he had had a stroke. Then of course the "fasticulations" We could see his muscles jumping under his skin. He has menieeres disease, so he is dizzy all the time anyway. When he would lay down his breathing would become more labored. Try propping yourself up on pillows when you sleep. The BiPap really does help. Lori
 

Al

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Hi Laurie. Even if you don't have any kind of a diagnosis it shouldn't take a rocket scientist to figure out that you need a Bipap ASAP. I'd be calling your pulmonologist.

AL.
 

Laurie H.

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Hi, Lori. I hope that your husband is doing okay. How frightening for you to take him to the ER and then find out about ALS. How did you know to take him to the ER? How is he doing now? I am glad that the BiPAP is helping him. What is the best sleeping position for him? I am struggling to find a position in which I can sleep without my breathing stopping or me feeling sick and dizzy.

I am scheduled to see my neurologist and my pulmonologist (sp?) tomorrow. The lung doctor will share the results from my recent CT scan of chest, pulmonary function test, and arterial blood gases tests. I feel so scared; my husband is a great support but I have not shared with him the level of my fear. My lungs have been burning for years now (first told my primary care physician before 2005). He told me that I had acid reflux or costa chondritis and then referred me to a psychiatrist for anxiety. I actually had to call another doctor myself to request to see a lung specialist who ran the recent tests that showed that my FVC has declined from 90% to 69%. I KNOW that didn't happen because I was under stress! I think sometimes doctors blame the patient when they can't find a reason for the person's symptoms. It makes me angry and sad because so much time has passed since I first began having symptoms.

Do you know if ALS can ever first show itself as a respiratory symptom? Do my symptoms sound like ALS to you? Bilateral clonus, hyperreflexia, slightly upward moving big toe, breathing difficulties, extreme fatigue, weakness, muscle twitches all over body, skin sensitivity on parts of my face (lips, eyes, chin) and roof of mouth. Lori, thank you for taking your time to answer some of my questions. I have felt so alone and it feels good to connect with someone who understands the disease in a personal way. Laurie
 

Erica

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Larie, I second Al.
In addition, a Sleep Study is in order; you might have Sleep Apnea. Good luck,Erica
 

Laurie H.

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Thanks to all of you who responded so quickly to my questions. It is comforting to connect with people who are compassionate and so willing to help. THANK YOU! Laurie H.
 
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