Shortness of breath mystery

Posted by smokeys @smokeys, Aug 10, 2016

I am a 69 y/o female who takes no meds. For years I have had shortness of breath preventing me from being able to walk a block; my hair is also thinning (no indication it is genetic). After screening including Echocardiogram, CAT Scan, MRI, and Chest X-Ray ruling out heart issues, COPD, lung cancer, emphysema, and asthma, I convinced the fifth doctor I tried to order a complete iron screen even though my iron tests came back high. The complete screen showed high results for all except Ferritin which was very low. Until I could see my doctor again, I researched treatments and started taking 10 mg/day bioavailable iron (Bovine Ferritin and as aspartate) which helped somewhat. My oxygen levels went from the 86-88 range to 89-91. My doctor supported the course of action I implemented and suggested taking 20 mg/day which may have helped a bit more. I have moved to another city and have yet to find a new doctor. Even when I do, I am leery about finding one who was as willing as the fifth doctor was to pay attention to my request. Does anyone have any ideas, theories, or experiences that can help me? I want my energetic, wonderful life back!

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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Welcome @smokeys, it can be a challenge to find a doctor in a new location. Have you asked your fifth doctor who supported you to write a report of the course of action and goals you were working towards? That way you can share the test results and treatment goals with your future doctor as you interview them.

I’m happy to see @apportee has already reached out to you. Hopefully you can problem-solve together. I’m also tagging fellow Connect members @heathert @texas7777 @softballqueen @yoanne @cynaburst and @katemn who have all talked about shortness of breath for a variety of reasons, and may be able to shed some light according to their experiences.

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@apportee

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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Welcome apportee, the only thing I would add is to say that I had various tests taken .. was misdiagnosed .. UNTIL finally a Pulmonologist did a “sputum culture” which when two months later showed up with MAI/MAC .. MYCOBACTERIUM AVIUM Complex Pulmonary Disease. That finally led to proper treatment.

I am not saying that is your issue .. just that it helped me to find what was going on in my body! Don’t give up. I always remember an article I read when I was in my 20’s about a woman who just KNEW something was going on in her body .. ended up going to 17 doctors before you FINALLY was given a proper diagnosis! That memory helped me through raising my children .. didn’t give up when I couldn’t find an answer! YOU don’t give up until you find out .. YOU know your body better than anyone else! Sending you a hug in this journey to better health! keep us posted on how you are doing! Katherine

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@apportee

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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Thanks everyone for your input, I really appreciate it. The thought of me having mycobacterium avium complex pulmonary disease, that is a possibility. I will check with my doctor or my pulmonlogist about this condition, maybe I will finally get a diagnosis for my shortness of breath and cough. Again thank everyone for your reply.

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@apportee

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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If you don’t mind sharing, what was your treatment regime for mycobacterium avium complex pulmonary disease? Thanks

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Hello apportee, I ABSOLUTELY would tell you NOT to put the cart in front of the horse!! In life we have enough on our plates just getting through each day WITHOUT worrying about every single “what if”!! PLEASE do not do this .. if only as a favor to me! I went down that road .. and was VERY sorry for it! Trust me .. IF and when you are diagnosed with MAI/MAC .. I and every single person on this Forum will be beside you on the journey .. holding your hand .. supporting you. But that is a BIG if! Just wait it out. I love the saying “Put your energy into what you can control .. and let go of what you CANNOT control!”

To me for you .. that means putting your energy into finding a good Pulmonologist who will do an effective sputum test .. sending it off to be tested for MAI/MAC .. AND YOU being patient for the necessary two months for the culture to come back .. THAT is letting go of what you CANNOT control .. the outcome. I hope you will understand what I am trying to get at? I am sending you LOTS of positive energy in your journey .. I know you need it right now .. and a hug! Katherine

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@katemn

Hello apportee, I ABSOLUTELY would tell you NOT to put the cart in front of the horse!! In life we have enough on our plates just getting through each day WITHOUT worrying about every single “what if”!! PLEASE do not do this .. if only as a favor to me! I went down that road .. and was VERY sorry for it! Trust me .. IF and when you are diagnosed with MAI/MAC .. I and every single person on this Forum will be beside you on the journey .. holding your hand .. supporting you. But that is a BIG if! Just wait it out. I love the saying “Put your energy into what you can control .. and let go of what you CANNOT control!”

To me for you .. that means putting your energy into finding a good Pulmonologist who will do an effective sputum test .. sending it off to be tested for MAI/MAC .. AND YOU being patient for the necessary two months for the culture to come back .. THAT is letting go of what you CANNOT control .. the outcome. I hope you will understand what I am trying to get at? I am sending you LOTS of positive energy in your journey .. I know you need it right now .. and a hug! Katherine

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Thank-You for the sound advice. I will take it one day at a time and not rush into anything. I will talk to my pulmonlogist and ask his advice. Thank-You so much.

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Good for you, apportee! So happy for you! Just put one foot in front of the other .. be happy and grateful for all the little good things you have in this life .. we all have them! Sending you a hug! Katherine

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@apportee

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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Apportee….have you had a cardiac stress test and nuclear scan ?
All of us are so different but ….
I had been increasingly fatigued to the point of having to rest after walking half a block…my pulmonary function tests were stable..as were blood pressure…ekgs,…all blood tests…the stress test was normal ….however the brand new nuclear scan machine showed an area of heart was ischemic…wonderful cardiologist did cath test and found a coronary artery 99% blocked. One angioplasty and 2 stents later and the ischemic area back to normal and I am back to having energy except the persistent cough.so see if you can get these tests done…the nuclear scan was the most accurate for spotting the issue.
Terri s

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@apportee

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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Thanks @tdell. I have not had a nuclear scan. I have had all the other ones and they were Normal. My doctor is not so receptive to patients suggestions. Remain short of breath and walking short distances have not improved. Thank you for your reply.

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@apportee

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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apportee, I can ONLY speak for myself .. but quite frankly I would NEVER work with a doctor who was “not so receptive to patient suggestions”. That doctor would be OUT THE DOOR as I quickly started my research for a second opinion. I may be age 73 .. but I am NOT of my parents generation where doctors were “gods” .. and we were to sit reverently at their feet! GARBAGE!! As far as I am concerned .. doctors are my EMPLOYEES .. AND I me THEIR EMPLOYERS!! Enough said and I will get off my soap box .. but it ticks me off when I hear about doctors are still of the old school and will not “work with” the patient. Just my opinion. Katherine

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@apportee

I also suffer from shortness of breath when going up stairs and just walking a short distance. I have seen a cardiologist, lung specialist and had several test done . But no one have come up with a diagnosis on why I am having shortness of breath when walking. I am 59 yrs old now. Have been bother with this for 2 years now. Do anyone else have any information or input on this? Thanks

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Apportee…not being a trouble maker but reminding you….all my tests except the nuclear scan were normal including the stress test. Terri s

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