Sarcoidosis

Hi,

i was diagnosed (but suspect I was dealing with for a while more) sarcoidosis back in Dec 2020.

It started off that breathing was hard at times and would have rather nasty pain in chest on left side.

I was in hospital for a few weeks where they did numerous scans and the likes. They also managed the pain with opioids medication and oxygen therapy for breathing (tho the consultant didn’t like that so he stopped it).

Since discharge though not a whole lot has been done. The condition has definitely gotten worse but my GP refuses to do much anything. 😅

I was there yesterday because the lymph nodes in my neck have swollen so bad it’s too painful to swallow or talk much as well as the chest pain being rather bad and also a stomach pain all of which seem to be connected to the illness.

i was referred to a surgery clinic (not sure for what reason they didn’t really explain) and any enquiries to pain remedies were basically ignored! Kinda just unsure if this is what I should expect then? Am I mad to be mad about this? 😅

Curious if there’s other folks who have problems like this and how their GP/Hospital look after it. For what it’s worth in two years since diagnosis I’ve been given no means to treat the illness either it’s symptoms or otherwise. I know steroid medicine is often used I’ve been prescribed it i wanna say max 3 times.

Basically I’m just left to my own devices which seems unreal to me with a disease like this?

markmoto

https://www.boards.ie/discussion/2058279450/sarcoidosis

There are many viruses and bacterias in human bodies that sitting dormant for years and when the environment is right, activates and trigger autoimmune diseases. These viruses can go into remission for years and then come back and cause more troubles.

We have certain medication that can help but I don't know the exact reason why they wouldn't prescribe, perhaps worth to visit new GP.

I know a few people who put autoimmune disease into remission by changing lifestyle. Low stress and very low on high GI food e.g. no more milk, bread, grains, pasta, pizza, sugar, fizzy drinks, veg. Oils, processed foods, etc. I think its called ketogenic diet

More link below

https://www.google.com/search?q=ketogenic+diet+and+autoimmune+diseases

AliceN

https://www.boards.ie/discussion/comment/120291806#Comment_120291806

As far as I know, the treatment lasts a few months until it relieves symptoms and can be prolonged. Usually, doctors prescribe corticosteroids such as Prednisone and Prednisolone (you can check the info abut them on the Canadian Pharmacy site if interested). In some cases, sarcoidosis goes away on its own. However, it may last for years and may cause organ damage.

Speaking about changing lifestyle, certain diets can really reduce inflammation in the body. I'm not sure about Keto, but eating a balanced diet with plenty of fruits and vegetables, whole grains, lean meats, and healthy fats might be helpful.

Graces7

https://www.boards.ie/discussion/comment/120105301#Comment_120105301

That is how many of us with CFS/M.E, another auto immune condition, live ie dietary therapy.