1. < Lung Health

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!

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Buc7777 | @texas7777 | Sep 20, 2016
In reply to @aliskahan "Welcome @smokeys, it can be a challenge to find a doctor in a new location. Have..." + (show)
@aliskahan

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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I was recently diagnosed with PVCs and with much reluctance, I started Toporol (low dose). Immediately helped with my symptoms. More energy, less feeling the PVC's, etc., but still short of breath at times and headaches. MRI last week showed no issues in the brain, but showed a ton of sinus polyps that are probably contributing to my light-headedness, brain "tension" headaches, etc. I've noticed that my shortness of breath got worse, during the 2 days I was awaiting the MRI results. Thus, for me, it was related to some extent to anxiety. Maybe also due to me having 2 youngsters, stressful job, etc. Hang in there & visit this site often. A lot of great caring people in this discussion group.

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sandyt | @sandyt | Nov 20, 2016

Hello. My first time here and I can see that the information I am reading is helpful and I don't feel so alone. I recently have been diagnosed with mycobacterium Abscessus. I can't walk very far without going into a breathing attack. I wonder if this disease is the reason I can't walk very far? I've had two sputum tests, one positive and one negative. My doctor says I need to take another sputum test as she doesn't want to go forward with certain drugs until she sees if the next test is negative or positive. I am on oxygen full-time. I am unable to clean my house or cook. I've had bacteria pneumonia twice in a year since I moved from Missouri to Texas. I am 77 years old and have been in fairly good health until about two years ago in MO I started getting tired and sleeping a lot. I unfortunately had a doctor that did not give me the care I needed but I didn't realize it at the time. I was not referred to a pulmologist, did not know I had copd and learned from other people that I needed more help. I begged for oxygen and a nebulizer and finally got it and it helped a great deal. Now that I am in TX I am getting great care. I'm just worried about this disease if I can beat it or not. It's a tough one. I want to walk again. Any advise you can give me is greatly appreciated.

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2 replies
Katherine, Alumni Mentor | @katemn | Nov 21, 2016
In reply to @sandyt "Hello. My first time here and I can see that the information I am reading is..." + (show)
@sandyt

Hello. My first time here and I can see that the information I am reading is helpful and I don't feel so alone. I recently have been diagnosed with mycobacterium Abscessus. I can't walk very far without going into a breathing attack. I wonder if this disease is the reason I can't walk very far? I've had two sputum tests, one positive and one negative. My doctor says I need to take another sputum test as she doesn't want to go forward with certain drugs until she sees if the next test is negative or positive. I am on oxygen full-time. I am unable to clean my house or cook. I've had bacteria pneumonia twice in a year since I moved from Missouri to Texas. I am 77 years old and have been in fairly good health until about two years ago in MO I started getting tired and sleeping a lot. I unfortunately had a doctor that did not give me the care I needed but I didn't realize it at the time. I was not referred to a pulmologist, did not know I had copd and learned from other people that I needed more help. I begged for oxygen and a nebulizer and finally got it and it helped a great deal. Now that I am in TX I am getting great care. I'm just worried about this disease if I can beat it or not. It's a tough one. I want to walk again. Any advise you can give me is greatly appreciated.

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Hello Sandy, I am SO glad you have found our Forum .. Welcome! If you have done any reading of past pages .. which I STRONGLY suggest you do to educate yourself on our disease .. you will find that I ALSO had “MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES”. Now Sandy .. if you read past pages you will find MANY of us have “beaten” this disease ie have become “stable”! Myself .. I have been “stable” .. off antibiotics since May 2014 .. travel .. live a full happy live .. age 73 .. life is good!

Sandy, you REALLY need to educate yourself on this disease that we all share. I would especially recommend an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
and GOOD INFO: http://maclungdisease.org/frequently-asked-questions

The reason it is SO important to educate yourself is that YOU are your OWN best advocate. Just as in Mo where you got poor care .. had you known what you are going to learn here .. you would have FOUGHT for yourself! You are given but one body in this lifetime .. you MUST take care of it .. so it can take care of you! Frankly I DISAGREE with your doctor relying ONLY on a positive/negative sputum test! WHY? Because you will learn from reading the pages of this Forum that your doctor could end up with 2 out of 3 NEGATIVE sputum tests BUT that could ONLY mean the sputum came from areas of the lungs that do NOT have issues! That is WHY there is usually a SERIES of cultures .. so that there will be cultures from VARIOUS areas of the lungs! BUT with your related issues of fatigue .. poor breathing .. sleeping a lot. YOU must TELL the doctor all these issues .. THEN get a second opinion if you are NOT satisfied with it! Keep in mind it is the overall picture of your health that the doctor should be considering .. NOT just 2 out of 3 cultures.

Now Sandy, WITH a good Infectious Disease Doctor that is EFFECTIVELY following your MAC .. Yes .. you absolutely can “beat” the MAC .. I did and many of the rest of us have! But you must keep in mind that MAC can only be “stabilized” .. not cured. That is why after the antibiotics have stabilized the MAC .. we must continue to be followed with check ups. Please do your reading .. and keep coming back to our Forum .. you will find our people are all on the same journey .. plus are very kind and supportive! I am sending you a hug during this tough initial time! Stay strong and stay peaceful! Katherine

REPLY
sandyt | @sandyt | Nov 21, 2016
In reply to @sandyt "Hello. My first time here and I can see that the information I am reading is..." + (show)
@sandyt

Hello. My first time here and I can see that the information I am reading is helpful and I don't feel so alone. I recently have been diagnosed with mycobacterium Abscessus. I can't walk very far without going into a breathing attack. I wonder if this disease is the reason I can't walk very far? I've had two sputum tests, one positive and one negative. My doctor says I need to take another sputum test as she doesn't want to go forward with certain drugs until she sees if the next test is negative or positive. I am on oxygen full-time. I am unable to clean my house or cook. I've had bacteria pneumonia twice in a year since I moved from Missouri to Texas. I am 77 years old and have been in fairly good health until about two years ago in MO I started getting tired and sleeping a lot. I unfortunately had a doctor that did not give me the care I needed but I didn't realize it at the time. I was not referred to a pulmologist, did not know I had copd and learned from other people that I needed more help. I begged for oxygen and a nebulizer and finally got it and it helped a great deal. Now that I am in TX I am getting great care. I'm just worried about this disease if I can beat it or not. It's a tough one. I want to walk again. Any advise you can give me is greatly appreciated.

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Katherine, thank you so much for your encouraging words. I will most definitely take your advise and read all I can to educate myself on this disease. It is comforting to know others like yourself understand. I am excited to learn all I can and to know I could actually beat the MAC is giving me hope. I appreciate what you said about the cultures. I will be considering this seriously and if I don't get answers, then I will get a second opinion.

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Katherine, Alumni Mentor | @katemn | Nov 21, 2016

Sandy, you go Girl! That is EXACTLY what this Forum is for .. to encourage each other to live our lives to the best of our abilities .. to NEVER give up .. to know that we are ALL on this journey together .. the same journey. I'm sending you a BIG hug! Katherine .. now off to bed .. I'm pooped!

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38w | @38w | Apr 22 8:05am
In reply to @apportee "I also suffer from shortness of breath when going up stairs and just walking a short..." + (show)
@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<br><br>

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I assume you have had extensive blood work done. I was diagnosed about a year ago with pulmonary fibrosis, but during the workup for that disease, it was discovered that I also have mild Chronic myelomonocytic leukemia (CMML), which can cause shortness of breath.

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