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Sammantha

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Sorry for being crude but i am highly ticked off............ Most of you know i have been in limbo and recently started having breathing issues........... My very first muscle symptom was almost three years ago when i had a chest and throat spasms but thought i was having a heart attack.............. I did not develop shortness of breath until four months ago......... Well now when i lay down i sound like an asthma victim. If i lay down in bed on one pillow, i try to breathe out of my nose and i cant. It so much work that i have to sniff like a vacuum, no wonder i have been mouth breathing for so long and getting dry mouth........ but now when i breathe out my mouth it makes this awful noise and my throat closes up and i cant get air! So i bought some thick pillows and prop them up and my head so i can breathe peacefully. This morning i decided to lay down and see if it does it and sure enough it does, but if i am propped up or standing i can breathe fine, but my chest is sore all the time... I AM not sick with a cold or infection! My nuerologist has noted facics in my tongue but never ordered EMG's of any of my breathing muscles or my tongue. My last EMG they did the same muscle's. After i saw his superior i stopped all together.... I could not take going anymore......... So now i am going to go to my GP........Where she sends me from there only god knows........... Should i call my old nueroloigist and say i want that referral to Hopkins? Please help... Sammantha
 

sdsyd

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My advice would be to call GP OR even got to ER if this is suddenly getting worse.
 

Jamiet

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I hate this for you, i've been reading your post and feel for you.

Get the referral! Go to a good center specalizing in ALS..!

Good Luck

Rgds,

Jamie
 

BethU

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Sam ... I agree with sdsyd ... if you are struggling to breathe, it is a medical emergency. If you can get an appointment with your GP immediately, that's a place to start. If you can't get in to see him/her today, I'd suggest the emergency room.

Also, I'd suggest you call your old neurologist and ask about a referral to Hopkins asap. It is time to kick some butt and get this resolved. But DO get some medical attention immediately ... your GP or the ER.

One hint: if you feel that your throat is closing and you can't breathe, try "sipping" air, like you're sipping hot soup from the side of a spoon. When I was in the hospital with respiratory problems, several times I couldn't breathe at all, and that's what the nurses told me before they got the ventilating equipment to me, and it helped.

Hang in there !
 

brendapals

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Sam,
please, please, if you are having trouble breathing, get to the gp or the er today. I will be thinking of you and will get back on the forum tonight and check in,
we'll talk soon,
brenda
 

Zaphoon

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Sam

Call me crazy but I put air intake on the "high priority" list. If its not incoming, I'd be making a hasty trip to the ER. (I can't hold my breath for more than a few minutes. This leads me to believe I can't go without air for about the same amount of time.)

Do what it takes to get air! Pretty please?

Zaphoon
 

patricia1

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Hi Sam
Sometimes the muscle in back of your throat the soft palate can drop down and cause obstruction if weakened.
Or if someone is in heart failure cannot lay flat because of fluid around the heart and lungs and needs pillows to breath ,
I would look into this and get an answer,

Good Luck

Pat
 

brendapals

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anybody heard from Sam?
 

BethU

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Hey, Sam ... let us know how you're doing. We're all worried!
 

freddiesnetty

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I hope she is alright...........Zaphhoon, I love your aviator, It reminds me of when I was a child....hhhmmm let me see that was about a hundred years ago...This disease will age you!
I hope that Sam goes to the emergency with this.....sounds so scary.
netty
 

rose

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Sam, How are you doing sweetie?!


1) any breathing difficulty needs immediate medical attention

2) About the problems breathing out.... I've discussed this AT LENGTH with my doctors. Depending on the specialty of the doctor, the response has ranged between puzzlement and complete understanding as to what I was describing, and an explanation as to why.

3) the Short Version of an answer (given to my by the director of the ALS clinic at Hopkins) is that with UMN weakness involving the soft palate, the airway collapses with the "out" breath. She said they can actually hear the soft palate bumping down and closing off airflow with patients that have advanced UMN when the patient is asked to forcefully take a deep breath in and to expel it. (during expiration)

4)Propping up at night helps because of the angle, even though, (such as with CPR) the theory is that the head tilted back opens the airway, this isn't the case with a weak soft palate. Even while sitting here typing this I'm experimenting trying to figure out the correct verbiage. ... and I can breathe perfectly well with my head perpendicular to my neck, and as I tilt it back some, it progressively cuts off the airflow the further I tilt it. Much more so breathing out than in.

So, you gotta stay propped up at night and keep your head from tilting back, and you sound like you need the CPAP of BiPAP for sleeping (to me) and you've got to get yourself into Hopkins.

I don't know if you drink alcoholic beverages or not . I've noticed a very definite link with me between how many glasses of wine I've had, and how easily my soft palate wants to close down..... and lack of sleep/ stress had a huge negative impact as well.

Please let us know how you're doing now, and please beg and plead for your GP to get you that referral! ((hugs)) :)
 
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awieleba

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just a question to those of you in the know...about breathing

I have SOB, but it is the oppisite for me, I breath better at night when I am laying down? I notice the SOB more while driving or sitting when reading to kids. I can get a deeper breath in while laying down. I thoght maybe my diaprham is weak?

any thoughts......
 

Sammantha

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Thank you everybody for your responses, this is a very lonely disease......... I called my GP who won't be in her office until the 29th. I will see her then......... Its crazy how things can progress, i am so groggy all day like i have the flu. It reminds of me of when i was working full time and would come home and just lay out and not move until Monday morning. I am not sick with anything and i am not doing that much activity, but i am so tired and no matter how much i sleep its not enough. I dont wake with headaches and i know that is a sign of CO2 build up in the system so that is good. My sons birthday is saturday and he has basketball try outs tonight..... I feel so bad that i do want to go to the ER but i know they will just refer me to a pulmonologist or neurologist and that will take time. I have been getting dizzy but i wont go on, i am getting tired of listening to myself! I hope everyone is doing well today and keep the advice coming, i need it... Sammantha
 

Sammantha

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Oh Rose, i wanted to say that when i take a deep breathe through my mouth even sitting up the back of my throat almost completely closes up... It makes that sound you here when you see people with emphysema on TV and they take breathes in. Alcohol definetly affects me negatively....... In July i was at a party having a good time laughing hysterically for hours and drinking a lot. My chest started getting so heavy and i got light headed and panicky.... Not from the alcohol persay. I went to another room and quietly sat forward for about a half hour and had to concentrate breathing. It took a full hour before my breathing was back to normal. I drank a lot of this punch and rum drink, so i think one or two glasses of wine might be okay but anymore would scare me. SAm
 

rose

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Sam, Just use good judgment, and if you're really not feeling like you can breathe, go to the ER. If you feel the measures you're taking, such as sleeping on a mound of pillows is working, and you're not getting horrible headaches (which is a good sign) then I guess the 29ths isn't all that far away.

But.... when you do go to your GP, you stand up for yourself and insist that you need help, and that you don't want to be send back to Duke. Imagine I'm in the room with you, ready to pitch a fit if your doctor doesn't listen to you (and, believe me, I would if I could).


BTW, my dad had emphysema, although he was a lifelong non smoker. When I first started getting sick, this was what they tested me for after the ANA's came back normal, as there is an inherited form of COPD.... so I know the sound you're describing quite well, my dad suffered so much with it,and I'd give anything to still have him around.

Make sure you keep us posted, I hope your son does well with his basketball try-outs. Wish him happy birthday for me. :)
big hugs!
 
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