Sarcoidosis or Asthma?

[wiserlady]

Has anyone else had symptoms which are very much like bronchitis, asthma or other lung problems and had to seriously consider that it is sarcoidosis?

[Hidden]

I would imagine that on the onset of any symptoms at any level of seriousness, one would see a Doctor and a diagnosis would alleviate one from "guessing" . . .

[wiserlady in reply to Hidden]

Firstly you cannot see a doctor now, with the lock down, and even before the lock down you would see a nurse not a doctor. Secondly most of them have never even heard of this disease and assume it is asthma. 90 % of cases of sarciodosis were incorrectly labelled as asthma for years. So much for alleviate the guessing and ask a doctor. He is just guessing. The symptoms of asthma and sarciodosis are the same! So what is the point of asking him when 90% of the time he will say it is asthma. It is only if you get x rays and scans they might see signs in the chest which do not fit asthma. Most will refuse to do these tests when they insist it is just asthma.

[HockeyMom313 in reply to wiserlady]

Well, I actually had to have a biopsy and blood work to diagnose my sarcoidosis. You could start by asking your doc, when you can go, to add in some additional blood work to whatever they are ordering, and they usually will. I will tell you though, sarcoidosis and asthma do not look the same so if someone is telling you that, they are giving you misinformation. Sarcoidosis more closely resembles lymphoma and that is what I was misdiagnosed with first. Some of the same treatments that they use for asthma and sarcoidosis are the same but the biggest difference lies in the bigger use of immunosuppressants and monitoring. Though, the sarcoidosis has scarred my lungs, my asthma attacks have hit me hardest as far as quality of life. Another, non-medical thing you could do though, might be to check out some deep breathing exercises online. I did pulmonary rehab and it made a world of difference in both of those ailments.

[wiserlady in reply to HockeyMom313]

Some of what you say makes sense to me with my experiences and knowledge, some not. Thank you for the idea of doing deep breathing exercises online through u tube, I have done that, but it is hard because my lungs can only take in a quarter of their normal capacity. That has been that way all my life.

Something which might make sense to you and certainly does to me is that we are all scattered all over the globe. I am in the UK, my experiences are those of a person in Essex UK, you might be in USA where it is all different. I have spoken to many in this area who all understand and have the experiences as myself re a doctor or nurse or whatever.

[Hidden in reply to wiserlady]

"WRONG!" I saw my Pulmonologist and had a PFT (second person) and Blood Test (third person) just last week. Then saw my PC to finish the course on any and all of the inoculations (second person) a person could get these days, Hep A&B the next day. Except a COVID-19 inoculation. Fingers crossed that it'll come soon. I'm rooting for the Oxford/Astra Zenica version.

I could if they'd let me in, go anywhere in the world and be cleared for "travel shots". So "Yes" you can see a doctor.

By the way a year on Nucala and from the results of the PFT and Blood Tests, my Pulmonary Dr told me that I am now "normal"! "I Know!!" How rude calling me "normal". I mowed/scraped 100,000 square feet of lawn today in preparation for over seeding. So I guess I'm doing OK.

[wiserlady in reply to Hidden]

Here you cannot get to see a doctor, in fact you get a nurse but on the phone. You might get to see a doctor at the hospital if you are referred and wait six months or so, but everyone in this area who has waited for this has ended up with it being cancelled and having to speak to them on the phone. I go by how it is here and for me, like most do. I am in the UK, maybe you are not, or maybe your area is different to here, but that is how it is. And over the years I have spoken to doctors and nurses, been admitted to hospital urgently in ambulances for all this, and none of it has helped one bit. The most helpful of all of the doctors and nurses over the past five years was one nurse, who I speak to on phone when I need to. Makes far more sense than paying a day;'s wages to get a taxi to the hospital and back, plus a day's loss of income, to speak to someone there who is far less helpful and probably not helpful at all. The last time I did that I was told I had acid reflux, which I knew for a fact was wrong. Having health problems is bad enough without adding lack of income and losing your business to the list of problems.

[Dairyman11 in reply to Hidden]

Glad you are normal. I have been on Nucala for 6 months, and find it is mostly working well, but I am having a flare up right now. Did you find it took a full year to be normal, or did that occur earlier?

[AirIsUnderrated]

Hello,

No I haven't, but I'm relatively new to this 'game'. My only knowledge of sarcoidosis is from watching House!

In the UK where I live, I would arrange a telephone consultation with my GP and talk over why I thought my condition might be one thing or another. At my GP's surgery they triage over the phone or by video link, and if patients need to be seen face to face then they do see them. If symptoms are not alleviated by the treatment that is tried, you can request a referral to a respiratory consultant. Coronavirus is making the already lengthy waiting lists even longer, so yes, it could take months, but if you get worse the priority will be bumped up.

I'm sorry I'm not able to offer anything more useful. I really hope you manage to talk to someone who can help you. It is incredibly frustrating to be palmed off when you're feeling rubbish already.

[wiserlady in reply to AirIsUnderrated]

It sounds similar to here. Only Ive had all this being referred to a respiratory person before, years ago, and they just guess something out of thin air, very often something which ignores most of the symptoms. I have a list of diagnosis as long as my arm that made no sense.

And as the hospital was a very long distance away and I struggle to get out at all, let alone a distance, and have to have someone go with, and that means them taking a day off of work unpaid to go with, plus petrol, etc it became ridiculous. Nine times out of then they would say ah it is asthma and throw inhalers at me, totally ignoring I had been down that route before and the inhalers never help. So you can go around and around in circles then achieving nothing other than my partner losing his business and income in the process of taking me back and forth.

[HockeyMom313]

Yes, I have both, Pulmonary Sarcoidosis and Asthma and my Sarcoidosis was actually diagnosed first, about 4 years before the asthma. They suspected asthma for years but never diagnosed me with it. The interesting thing is, the asthma attack usually happens first and then because of the sarcoidosis, I can't recover quite as quickly. TBH, the asthma seems to jumpstart the other conditions much more than the other way around but they spent more time treating those.

[wiserlady in reply to HockeyMom313]

Hi and thanks for your response, I hope you are feeling better now?

It sounds nasty ! You must be feeling rough at times, hope it does not affect you too much.

I have read up about all of this and saw that monkelust, which they gave me months ago, is the western doctors version of a leuketreine inhibitor and the natural version of it is quercetin, so have got the natural version of that to try now, need to take two a day with some olive oil to help it to work.