I've recently had a spirometry which shows that I'm not suffering from asthma or copd, which I have been trying to find a diagnosis for the last two years while awaiting the test.
I have been told that I seem to have a restrictive pattern in the lungs for some reason, I am now being reference to a resp consultant/specialist and hopefully a CT scan.
Has anybody thought they have had asthma and then been told the same?
Grateful for any advice/info 👍🏽as I'm now more worried than before!
I did have TB when younger but it was cured so not likely to be anything to do with that?
Please let me know any thoughts/info/advice 👍🏽
Thanks
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Ami40
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Welcome to you Ami40, good to meet you. Hoping you get some replies soon. I just wanted to say hello as a carer for my husband who has COPD, sarcoidosis and heart disease. Xxx
I had been having breathing problem etc for years and was treated as asthma. I continue to have a productive cough snd infections. After further investigations it turned out I have bronchietasis and asthma. Once they identified what was wrong the various treatments greatly improved the symptoms. They think my bronchietasis was possibly caused my a childhood illness.
I suffer from Bronchiectasis and have pseudamonis bacteria in my lungs. About 3 -4 years ago I was in your position - getting heaps of tests as I struggled to breathe. I have had asthma and bronchitus since I was a child and am now 44 years old. My spirometry test also came out ok - at least on paper. It showed I was at the bottom end of normal. What the paper test the doctor saw didnt tell them was that I was having major coughing fits every time I took the test! The fact that I keep myself very fit must have distorted the test maybe. Bronchiectasis could actually be your issue as it can affect people who have had TB. It is basically scarring of the lungs.
The medical profession has its limitations. I personally believe it is an indistry that is only there to keep you alive but more and more of the World is now sick with some sort of chronic illness. Quality of life is another thing altogether. I would recommend you do your own research and find things that work for you.
I stopped working and became a stay at home Dad. Having less stress gave me an instant improvement as my previous job was very stressful. I have done alot of research into breathing and do various techniques to help with this. I have focussed on learning to breathe through my nose and using my diathragm. Previously I spent my life breathing through my mouth using the upper chest. I try to do some Buteyko breathing when I have the time and things like box breathing and similar techniques. This has helped. I also do lung clearance twice a day where I expel mucus. I cough quite alot out generally.
To begin with I thought I could cure myself with all of this work. Now I have come to accept that realistically all I can do is slow down the deteriation in my lungs. So far that is what I have done and my lungs havent got worse over the past 3 years. It is all pretty confusing as there are so many things that you could be suffering from. For me I got a MRI scan which finally told the doctor I had Bronchiectasis. I was actually lost in the system to be honest. I only got a referral in the end as we have a family friend who is a pediatrician and she pretty much diagnosed me in a 5 minute consultation. More than the system had done in 3 years! Lucky I found the back door lol.
My partner had an issue where she was allergic to sulphites. That also affected her breathing quite badly so that is another option for you to explore... Diet relates to that topic. You could possibly try an elimination diet (or rotation diet) to see if food is causing you to react. So much of our food is now heavily processed and covered in pesticides and chemicals. I have started an organic garden and try to eat as much home grown produce as possible these days including lots of herbs. Everytime I eat commercially baked bread I struggle to breathe for some reason! However I am fine with my trusty homemade sourdough.. in moderation.
In the meantime I would just watch what you eat, practice healthy breathing, stay calm and try not worry, and try to get daily exercise if possible. Even if this just involves pottering around in the garden (like I do) until you get puffed out. Then hopefully the doctors will let you know what is going on once and for all.
My late husband Bob found his breathing problems worsened when he ate products made with unbleached flour. We found that out by chance when we had a holiday in Rhodes in 1990 and his symptoms improved magically during our stay. We noticed that the bread and flour was golden in colour rather than bleached. I brought home a kilo of flour and baked bread with it, and he was fine, but not when I used our normal strong flour. After that, I baked bread with Alinson's strong wholemeal flour, which seemed to work for him.
Welcome back, Ami - we’re still the same people as when you were posting to the BLF a while back, it’s just they changed the name of the group after the BLF and Asthma UK decided to merge.
I’m ‘glad’ you have at least now got some definite answers as to what’s going on, if not quite a final diagnosis, yet. Restrictive conditions are less common than obstructive ones, accounting for about 20% of diagnoses, but there are a few members on the boards that have one. Hopefully they’ll pop in to say hello. What I would say is don’t google; there are a variety of conditions that can lead to restrictive disease, some more worrying than others, and at the most innocent end, it could ‘just’ be as a result of scarring related to having had TB. Once you’ve had a ct scan (and you will have a ct scan), that should indicate the origin of what you have and guide towards the best management and treatment options. My understanding is that it is quite common for restrictive conditions to initially be missed or misdiagnosed, particularly if spirometry is done by the GP, in part because they’re used to seeing and interpreting obstruction (although they don’t always get that right, either). Where fev1 is often normal in restriction, it seems that can add to confusion for less well read and experienced professionals.
Hi Charlie G, yes thank you for the welcome back buddy. Hope you're well, I wondered where this name of group had come from haha! Yes thank you, seems to be a restrictive pattern I'm showing, not getting as much 02 in as should be doing, which explains the tiredness, I've been having headaches too and aches and pains but not sure if that's connected to something else. Yes I'll hopefully get ct scan to find out what's going on. Most definitely, I realised Google is not a good idea as brings out some major terminal diseases which I hope it's not obviously! I've got a feeling it may be to do with TB from a child, any ideas what they would do in this instance?
Hi welcome. I have RLD and COPD with Asthma plus a few other things, so it is possible to have them all. If you Look at it in this way RLD is like a balloon been blown up in a glass jar it will go as large as the vessel and that, is it. but when it is released, it can show a stronger but depleted flow. Peak flows can show a better breath if you have asthma. (Mostly not taken into account) COPD is like the same balloon but over expanded and released loose and wrinkly? The most common causes of an asthma flare up are infection, exercise, allergens, and air pollution (an irritant) So not impossible to have both/all.
I was diagnosed and treated for asthma for years. Even though I told my gp that the inhalers just made me cough she insisted it was asthma. It wasnt until a new gp sent me for a ct scan that showed it was bronchiectsis and not asthma. I am sure after your scan you will have more of a clear idea what is going on x
Hello Ami40, welcome to the group , its not unusual to find variations in breathing diagnosis as many conditions have similar basic symptoms. Asthma itself has different types just like lung conditions, I notice its very rare to be checked for allergies , yet I beleive many asthmatics have allergy triggers. Fortunately we now have CT scans which are more detailed , chest X rays are not particularly useful for asthma , breathing tests are more revealling. Best wishes for a good outcome with the consultant.
Hi All, just wanted to say a big thank you and very much appreciated for a warm welcome, yes hopefully the ct scan will shed more light on the issues, apparently it's not asthma or copd, so some restrictive pattern showing that's all I know, apparently its about not getting as much oxygen in as should be doing, it may well be to do with the TB I had in children that's woke up from being dormant but hopefully will get confirmation one way or the other I due course 👍🏽
Best wishes. I hope your scan will get to the root of the trouble. There are so many lung diseases as well as the more well known ones, not to mention cocktails of several of the blighters.
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