Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Marsha, I think we can bring ourselves to this emotional level sometimes specially in the beginning trying to find out what the heck we have. Doctors can't make a quick decision either its a long process of elimination of everything else that's out there. I stuck with one doctor though my process and it took him about a year an a half but he came up with ALS then because of my fast progression. Believe me he give me a numerous amount of tests and even sent me to a MS specialist in Tampa at St ph's. Nothing clinical came back positive except for the EMG which showed abnormal signals in my legs and the MRI of the spinal cord which was thinning at the bottom. Dr lin changed my dx after two years to PLS because my progression stopped and I have stayed about the same since that time. Course with our aging process things will wear out to!!. I'm still around after 15 years and still enjoying my life. Keeping a positive attitude and laughing as much as possible has kept me going. Quitting my job, relieving my self from stress were the other things I feel helped me. I know for some that isn't possible , I had a husband that still worked while I filed for disability. Everyone story is different and we have to do what we gotta do...................I do babble on...............Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 thanks. I have thought it was cause I am out of shape, as i had it so often when i lived upstairs last year. i moved in June last year to a first floor as i just couldn't handle the stairs. yesterday i went to an outside event, of course it was hot. while walking a short distances i felt like not enough air. even when i sat down, cooled off still felt the same. maybe its asthma related even though i haven't had asthma problems in years. dunno. primary just said its air hunger but last year didn't seem concerned. do you ever feel or think you are overreacting in reporting symptoms to your docs? i sure do. i feel maybe i make more out of something than it is so hestitate to mention things sometimes. since i know this air hunger isn't going to kill me, and goes away on its on, i doubt its anything afterall. yet at same time i think maybe that one symptom that i don't think is much and don't report is the one thing that will open the door for answers. how to balance this out on what to report or what not to report is difficult for me. partly due to i feel doctors don't want to hear it, and esp since i don't have dx, tests are all normal, the more i report the more docs just think I am a middleaged emotional woman thanks marfla Be Blessed Re: Air Hunger? >I have had that sometimes when in a very hot shower in the winter > only. Havent had it in the summer so must be something to do with heat, > > Aussie Maureen > > >> >> just me again with another annoying question LOL >> >> anyone experience Air Hunger (like you feel you aren't getting enough >> air, so take really really deep breaths, yet still feel like not >> getting enough air)? >> >> esp when limited exertion i.e. like walking up couple steps, dusting >> furniture, carrying groceries, >> >> yet also can have it while sitting, laying in the bed >> >> and can be even worse in the heat, or when hot? >> >> already been checked for heart disease nothing. heart is fine. >> circulatory system is fine. >> >> i have had asthma in the past but no asthma attack in years. and >> this isn't like asthma, really feels like not taking in enough air. >> my primary is the one that calls it air hunger. haven't mentioned to >> this new neuro. don't experience it often but now that warmer >> weather returning have begun exp it some again. >> >> thanks in advance >> marfla >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 hi, i have had air hunger for the past few years. it has been progressively getting worse...now with trouble taking a few steps....epsecially going up the stairs. had my lungs checked and i was at 91%. doctors said my lung capacity is fine but still could have problems with my muscles and that would not show up with that kind of test. my problems show up pretty randomly and sometimes last for days. at the same time i have just realized i have been getting progressive weakness in my legs. have not had an emg yet. hope your breathing problems clear up. Re: Air Hunger? I have had that sometimes when in a very hot shower in the winter only. Havent had it in the summer so must be something to do with heat, Aussie Maureen > > just me again with another annoying question LOL > > anyone experience Air Hunger (like you feel you aren't getting enough > air, so take really really deep breaths, yet still feel like not > getting enough air)? > > esp when limited exertion i.e. like walking up couple steps, dusting > furniture, carrying groceries, > > yet also can have it while sitting, laying in the bed > > and can be even worse in the heat, or when hot? > > already been checked for heart disease nothing. heart is fine. > circulatory system is fine. > > i have had asthma in the past but no asthma attack in years. and > this isn't like asthma, really feels like not taking in enough air. > my primary is the one that calls it air hunger. haven't mentioned to > this new neuro. don't experience it often but now that warmer > weather returning have begun exp it some again. > > thanks in advance > marfla > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi ya'll--- never heard the term " air hunger " but even in wheelchair i would appear to have had this while doing tasks that are strenuous for me from the chair. my lungs are fine, heart is fine but my primary gave me an inhaler when i told her my chest felt tight and that i couldn't breathe deeply at nite laying down (even propped up). i thought she was nuts, but i used it a few times when this felt the worst and also made sure i didn't have chest cold (i did have chest congestion i wasn't able to cough up because i couldn't breathe deeply enough) and inhaler helped me during that time. once i engage in a strenuous activity now, and i realize i am breathing wrong and cannot fix it with deep breathing exercises, i stop. usually if it is that hard to do then my arms are hurting very badly also cause they cannot do whatever i am trying to make them do. if i am too tired, i am going to be having trouble breathing deeply as well, so i try really hard not to get too fatigued as the last thing i need is trouble breathing. dunno if this is helpful or even what you guys are talking about, but maybe do a trial or two of slowing down or stopping while walking to rest during the day to see if it helps. also if you slow down a bit during the day the nite time stuff will ease as well cause you aren't so exhausted you cannot breathe! luck and definitely talk to neuro tawny shogun1001@... wrote: hi, i have had air hunger for the past few years. it has been progressively getting worse...now with trouble taking a few steps....epsecially going up the stairs. had my lungs checked and i was at 91%. doctors said my lung capacity is fine but still could have problems with my muscles and that would not show up with that kind of test. my problems show up pretty randomly and sometimes last for days. at the same time i have just realized i have been getting progressive weakness in my legs. have not had an emg yet. hope your breathing problems clear up. Re: Air Hunger? I have had that sometimes when in a very hot shower in the winter only. Havent had it in the summer so must be something to do with heat, Aussie Maureen > > just me again with another annoying question LOL > > anyone experience Air Hunger (like you feel you aren't getting enough > air, so take really really deep breaths, yet still feel like not > getting enough air)? > > esp when limited exertion i.e. like walking up couple steps, dusting > furniture, carrying groceries, > > yet also can have it while sitting, laying in the bed > > and can be even worse in the heat, or when hot? > > already been checked for heart disease nothing. heart is fine. > circulatory system is fine. > > i have had asthma in the past but no asthma attack in years. and > this isn't like asthma, really feels like not taking in enough air. > my primary is the one that calls it air hunger. haven't mentioned to > this new neuro. don't experience it often but now that warmer > weather returning have begun exp it some again. > > thanks in advance > marfla > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 oh but you babble so well thanks for sharing. I may not sound like it last night but i am positive. for me it's like just take whatever comes my way and make the best of it. I love my job and as long as I can do it, that makes things better for me esp emotionally. marfla Be Blessed Re: Re: Air Hunger? > Marsha, I think we can bring ourselves to this emotional level sometimes > specially in the beginning trying to find out what the heck we have. > Doctors > can't make a quick decision either its a long process of elimination of > everything else that's out there. I stuck with one doctor though my > process and it > took him about a year an a half but he came up with ALS then because of > my > fast progression. Believe me he give me a numerous amount of tests and > even > sent me to a MS specialist in Tampa at St ph's. Nothing clinical came > back > positive except for the EMG which showed abnormal signals in my legs and > the > MRI of the spinal cord which was thinning at the bottom. Dr lin > changed > my dx after two years to PLS because my progression stopped and I have > stayed about the same since that time. Course with our aging process > things will > wear out to!!. I'm still around after 15 years and still enjoying my > life. > Keeping a positive attitude and laughing as much as possible has kept me > going. Quitting my job, relieving my self from stress were the other > things I > feel helped me. I know for some that isn't possible , I had a husband > that > still worked while I filed for disability. Everyone story is different > and we > have to do what we gotta do...................I do babble > on...............Flora > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 sorry to hear you are having more issues with the breathing. hope they can determine the cause and it gets better soon for you. marfla Be Blessed Re: Air Hunger? > > > I have had that sometimes when in a very hot shower in the winter > only. Havent had it in the summer so must be something to do with heat, > > Aussie Maureen > > >> >> just me again with another annoying question LOL >> >> anyone experience Air Hunger (like you feel you aren't getting enough >> air, so take really really deep breaths, yet still feel like not >> getting enough air)? >> >> esp when limited exertion i.e. like walking up couple steps, dusting >> furniture, carrying groceries, >> >> yet also can have it while sitting, laying in the bed >> >> and can be even worse in the heat, or when hot? >> >> already been checked for heart disease nothing. heart is fine. >> circulatory system is fine. >> >> i have had asthma in the past but no asthma attack in years. and >> this isn't like asthma, really feels like not taking in enough air. >> my primary is the one that calls it air hunger. haven't mentioned to >> this new neuro. don't experience it often but now that warmer >> weather returning have begun exp it some again. >> >> thanks in advance >> marfla >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 thanks for sharing tawny. sounds very much the same. no congestion for me just that sensation of not getting enough air. iwill discuss with doc if i see it returning more or getting worse. marfla Be Blessed Re: Air Hunger? > > > I have had that sometimes when in a very hot shower in the winter > only. Havent had it in the summer so must be something to do with heat, > > Aussie Maureen > > >> >> just me again with another annoying question LOL >> >> anyone experience Air Hunger (like you feel you aren't getting enough >> air, so take really really deep breaths, yet still feel like not >> getting enough air)? >> >> esp when limited exertion i.e. like walking up couple steps, dusting >> furniture, carrying groceries, >> >> yet also can have it while sitting, laying in the bed >> >> and can be even worse in the heat, or when hot? >> >> already been checked for heart disease nothing. heart is fine. >> circulatory system is fine. >> >> i have had asthma in the past but no asthma attack in years. and >> this isn't like asthma, really feels like not taking in enough air. >> my primary is the one that calls it air hunger. haven't mentioned to >> this new neuro. don't experience it often but now that warmer >> weather returning have begun exp it some again. >> >> thanks in advance >> marfla >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Marfla, Have you had a Pulmonary specialist check you out? I didn't have problems with my asthma for years either, or so I thought. After being hospitalized with aspiration pneumonia, he became my " breathing " doc. Seems my asthma has been around for years, just didn't know what it was. I am now using a nebulizer morning and night (albuterol) and was taking clarinex. I also use Nasonex (sp) nasal spray from March to the first Autumn hard frost. I am breathing much easier now, but still occasionally will have to take 2 or 3 deep breaths, usually when I am lying down. My lung capacity is not normal. I cannot do the intake as well as he would like - intake capacity is only about 3500ml at best. He would like to see me closer to 4500ml. Guess I'll just keep him waiting. Just a thought, Mike Re: Air Hunger? > > >>I have had that sometimes when in a very hot shower in the winter >> only. Havent had it in the summer so must be something to do with heat, >> >> Aussie Maureen >> >> >>> >>> just me again with another annoying question LOL >>> >>> anyone experience Air Hunger (like you feel you aren't getting enough >>> air, so take really really deep breaths, yet still feel like not >>> getting enough air)? >>> >>> esp when limited exertion i.e. like walking up couple steps, dusting >>> furniture, carrying groceries, >>> >>> yet also can have it while sitting, laying in the bed >>> >>> and can be even worse in the heat, or when hot? >>> >>> already been checked for heart disease nothing. heart is fine. >>> circulatory system is fine. >>> >>> i have had asthma in the past but no asthma attack in years. and >>> this isn't like asthma, really feels like not taking in enough air. >>> my primary is the one that calls it air hunger. haven't mentioned to >>> this new neuro. don't experience it often but now that warmer >>> weather returning have begun exp it some again. >>> >>> thanks in advance >>> marfla >>> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 thanks Mike, no I haven't seen a pulmonary specialists. really more because it hasn't been that bad. just episodes of air hunger. and a few episodes of what sorta is like an asthma cough. I am taking allergies meds just because the season. I will mention to primary at next appt with her, nothing scheduled yet though. i do need to see her in the next month or so for routine lab orders. I hope you breathing and issues get better. Keep breathing marfla Be Blessed Re: Air Hunger? >> >> >>>I have had that sometimes when in a very hot shower in the winter >>> only. Havent had it in the summer so must be something to do with heat, >>> >>> Aussie Maureen >>> >>> >>>> >>>> just me again with another annoying question LOL >>>> >>>> anyone experience Air Hunger (like you feel you aren't getting enough >>>> air, so take really really deep breaths, yet still feel like not >>>> getting enough air)? >>>> >>>> esp when limited exertion i.e. like walking up couple steps, dusting >>>> furniture, carrying groceries, >>>> >>>> yet also can have it while sitting, laying in the bed >>>> >>>> and can be even worse in the heat, or when hot? >>>> >>>> already been checked for heart disease nothing. heart is fine. >>>> circulatory system is fine. >>>> >>>> i have had asthma in the past but no asthma attack in years. and >>>> this isn't like asthma, really feels like not taking in enough air. >>>> my primary is the one that calls it air hunger. haven't mentioned to >>>> this new neuro. don't experience it often but now that warmer >>>> weather returning have begun exp it some again. >>>> >>>> thanks in advance >>>> marfla >>>> >>> >>> >>> >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
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