Husband newly diagnosed, many questions...

Sorry to hear your husband is so sick.

How severe

steps to establish this include...but there are others.

Lung endoscopy...must important they take speciments during the procedure or they are wasting their time and yours.

Lung function full tests carried out at a respiratory lab.

Consultation with a respiratory specialist.

Lung Xrays.

Blood tests aimed at sarcoid evaluation there is a marker easily identifiable for active sarcoid.

Ultrasound abdo...this will identify other organs effected...commonly spleen and liver enlargement.

Sarcoid can effect any organ in the body 

Above recommendations will identify most problems for most cases but not restricted by any means to only these tests.

Bone biospy was then any granuloma present, this is a clear marker for sarcoid.

Hope this helps a little.

If we can help you any further please come back to this site as there are many  experienced people watching this site.

Regards

Tangles

Hi,

?Yes this is all new to me well the diagnosis, but have had symptoms for 5 years or more, I developed hight heart rate and suffered severe migraines and lots of of weird and wonderful stuff, so far my lungs are affected and possibly brain, its really important to have specialists that know about sarc as not many do.  Its difficult from what ive been told as its a multisystem disease, i was told in march it was in my lungs so have a lung specialist and possibly in my brain so am seeing a neuro that deals with sarc rather than just any old neuro.  Most people are on a steroid prednisolone but this too is not without drama, lots of side effects but does make you feel better initially, there is another drug ive just been presribed called methotrexate which everyone seems to be on also but I haven't started it yet as im already on a cocktail of them, not sure who deals with spleens but seem to have to have a different doctor for every organ, hopefully he feels better, there are some good support groups on facebook which are well worth joining, but its a very frustrating road as its quite rare and not alot of information on it or doctors who really know about it, but it really does cause misery it's turned my life upside down but im hoping this is short term once i get on the right medications.  Hope he feels better but yea get some info on a specialist who knows about sarcoidosis or you will be chasing your tail like me for years...Good luck..!! 

Go back to your doctor and tell them there is no relief from the vomiting and the pain is getting worse. Regrettably unless you keep the pressure on these days it's all taking way too long to get results. I've had to wait nearly 2 months to get a 24 hour blood pressure tape done! Hang on in there you aren't alone!

Hi Mrs Hare,

I am 35 and this is my second time round with sarcoidosis, however this time it started on my spleen and travelled to my kidneys lungs and legs. My spleen was double in size and was completely covered. I have several stomach scans because the pain I was describing to the doctors was like a tight belt being wrapped around me especially on my left side and Sharp pains also could not lie on that side or sit properly so they thought it was stomach pain. They had to biopsy me twice to outrule cancer (which is what they thought is was) after 7 months of tests they finally told me it was sarcoid and it had spread I was out of work.but because I had been waiting so long I got a job I worked 42 hours a week while with this condition and no treatment lol crazy I don't know how I did it tbh but when I went back.to the doc he told me because it has spread to much so quickly he said if I.dont take steroids as last resort I.will not be around in 5 years so I gave up my job and started them. Since then I have had some infections in different areas of my body due to immune system being weakened by steroids but there's a light at the end of the tunnel and they have really helped me along with other things I have been doing to help myself read my posts there are some tips there. I hope your husband will be ok good luck ?? and stay strong.