sarcoidosis?

[blonde72]

I am short of breath most of the time, I have had chest pain for over 6mths ,have had lots of scans had bloods taken which showed high serum ace lung biopsy showed nothing specific mild inflammation, at my wits end help.

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hi hun

i wish i had some information to give you but my problems are very different but i know what it feels like to be at your witts end

stick around there will be someone who can advise you and there are always the nurses you can call they will chat through your concerns x x

[jenss]

Hi blonde71, I am sorry that you are having this frustrating time. It seems that sometimes it is difficult for even specialists to work out what is going on. I have had lung issues since earlier this year: initially specialist said probably sarcoidosis or tuberculosis causing my issues. Apparently, not everyone with sarc is ACE positive in serum test (about 25% of people are not and I was not). After more tests and lung biopsy via bronchoscopy, more scans and blood tests I was told not tuberculosis, maybe sarcoidosis (was advised that sarcoidosis is often a diagnosis of exclusion) but not sure. So I am now being monitored to see what happens. Specialist said that only way to get more info is do open lung biopsy and he is not willing to do that as my symptoms are not "clinically" significant. He also does not want me to take any medication (unless of course I develop an infection etc.). dDid you have biopsy via bronchoscopy as well and are you seeing a specialist? Were you given any meds? After my initial frustration, I have now taken the view that I will keep myself as fit and healthy as possible and see what happens at the next review (reviews are x-ray and lung function test). Please try not too worry too much and do everything you can to keep you lungs clear of mucous, avoid infections, eat healthy, avoid irritants getting into your lungs, and stay active - of course see your doctor immediately if you feel something changes/gets worse. Take care hun we are always here to chatxxx

[blonde72 in reply to jenss]

Thanks Jenss ,yes I have had broncoscopy and Lung biopsy ,they only found mild inflammation >I am so limited in what I can do I was such an active person .I am under a specialist next step is bone marrow biopsy and pet scan freaking out .Just wish I had an answer.

[RibvanRey]

Hi. How do you come to the query of Sarcoidosis? True it is harder to detect than other forms of lung problems. However I would have thought that your lung biopsy would have allowed pathology to tip your doctor off if Sarcoidosis was present.

Try not to worry. Yes I know it is easier said than done. Generally the more major problems tend to stick up like sore thumbs. I hope they manage to get the condition under control for you. Regards Rib

[jenss in reply to RibvanRey]

Hi Rib, depending on what type of lung biopsy is done it may not give an answer. I had a lung biopsy via bronchoscopy: they only take small amount of tissue that way and my results did neither confirm or deny sarcoidosis (therefore inconclusive). Open lung biopsy is a better method (but much more risky) as larger tissue samples are removed. However, even that is not 100% conclusive in all cases. In fact, I have read on here that members had open lung biopsy and were diagnosed with a particular condition to be told years later after another open lung biopsy that the earlier result was wrong and they now have new diagnosis.... Hope that helps. Cheers,xxx

[RibvanRey in reply to jenss]

Thank you Jenss so much for providing a detailed account. Rib

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Hi blonde72, I had never heard of this condition until a couple of days ago so I googled it, I know everyone is different and it's only what I read but although painful at times It can disappear within a few months but can take years also, but u probably know all this, apart from being here to listen and be educated myself I can't offer any advice , but I'm sure others on here will. Take care soniaxxx

[blonde72]

hey everyone its blonde72 again ,I am getting very frustrated still no answers. Lung specialist wants me to have bone marrow biopsy and pet scan ,but can not get into an appointment to see haematologist until 28th NOV getting desperate I am so short of breath I feel like I am drowning and constant pain in left side under rib cage ,cant lie on my side as it hurts , I am tired most days ,finding it hard just with minor tasks .help.

[blonde72 in reply to blonde72]

I would love some insight ,I have had my pet scan showed no nodules ,my ace enzyme levels are still high 109 ,bone marrow on 3rd nov my left side has become swollen ribs have protruded out ,I have had every test ,drs have no answers help.

[jenss in reply to blonde72]

Hi Blonde72, I am very sorry that you are still going through this agony of all these terrible symptoms and no answers from the drs. The only upside is that they are continuing to investigate what the reason for your symptoms might be. I cannot offer any further advice, but I am sending you a very big hug and hope that you will get some answers and treatment that helps soon. Please let us know how you get on on the 3rd. Thinking of you and wishing you wellxxx

[blonde72 in reply to jenss]

Hi everyone ,I had bone marrow biopsy it was not painful having it done as I had anaesthetic, but after it was sore and still sore today, now I just have to wait for results which is nerve wracking, it is great to be able to talk and share what I am going through and my feelings, thanks for listening ,I hope they give me an answer.

[jenss in reply to blonde72]

thanks for the update and I am glad you got it done without complications. Hope the results come back soon with good news. Take carexxx

[blonde72 in reply to jenss]

Hello everyone ,bone marrow inconclusive, I have just had MRI and CT of neck abdo chest, don't know results yet i am still in pain on left side like stabbing and it aches ,drs don't know, my serum ace level is still high 110, the last few weeks my right eye becomes so red and sore and gritty, blurred vision ,it waters ,sensitivity to light and it is hard to open it happens about once a week then it returns back to normal , I have not told dr yet because I don't know whether its important. As dr does not know what's wrong with me.help!!!!!

[jenss in reply to blonde72]

Hi Blonde, so sorry you are still going through this with awful symptoms and no answers despite all the tests. Don't you love it _NOT!!!_ when tests come back as inconclusive. As I said they don't know what I have either, but I don't at least have symptoms at the moment. I have heard that sarcoidosis affects eyes so you should definitely mention your eye problems to the dr as they may well give them a clue and option for to take samples to find maybe sarcoid bodies to come up with a diagnosis and treatment. Are you still short of breath and are they giving you any meds? Let us know what the latest CT and MRI show. I wish you well.xxx

[blonde72 in reply to jenss]

thanks jenss yes still short of breath everything is such an effort ,they have given me puffers asmol but does nothing .thanks

[jenss in reply to blonde72]

Hi Blonde, sorry to hear this. If it is sarcoidosis you would not expect the buffers to work. Have a good chat with dr when you get your cT and MRI results and mention all your symptoms. Often sarcoidosis is a diagnosis of exclusion so may take some more time. The good news about having sarcoidosis is that steroids often help and the disease is self limiting meaning in stops eventually, and hopefully before doing lots of permanent damage before stopping. I hope the drs review you soon and let us know how you go. Good luckxx

[blonde72 in reply to jenss]

hi everyone I am wondering ,could having a high ace enzyme mean other things I have had cancer on left side on shoulder in 2003 the same side I am having pain worried it could of come back, I have not been back to oncologist since 2008 they said its unnecessary to keep coming back .

[jenss in reply to blonde72]

Hi Blonde elevated ACE levels are not only seen in sarcoidosis but also other inflammatory conditions. I have never heard cancer being mentioned as one of those conditions, but I am not a dr. Also this may give you some reassurance, my dr has this line "if it hurts it's most likely not cancer as cancer generally does not cause pain". I assume your care-team is aware of your past history? So, I would think that with all the testing they are doing they would have looked out for recurring cancer. Just to be sure maybe ask about wether you should go back to the oncologist for a check-up. I hope you are not feeling too bad currently. My best wishes to you, take carexxx

[blonde72 in reply to jenss]

Receptionist at cancer unit has said that haematologist wants to see me this week as my MRI and CT results have come back, when I saw him last time he said I did not need to see him. Is this standard procedure as my lung specialist has also received them to but has not said anything I am seeing him on 17th .

[jenss in reply to blonde72]

Hi blonde I don't know if this is standards procedure. I assume your GP prescribed the MRI and CT scan and told you they are inconclusive? The haematologist obviously saw something on the scans and that he wants to discuss. Make sure you ask him about the chance of cancer recurring as discussed in previous posts. Your lung specialist knows you are seeing him on the 17th (next week) so obviously does not think MRI and CT results warrant you coming in earlier. I am glad that you are getting to see both haematologist and lung specialist in the next week or so, and hope that you will get some answers - and really hope that it will be good news. Hang in there, all the best and let us know how you go at the haematologist in the next few days. Keeping everything crossed for youxxx

[blonde72 in reply to jenss]

Thanks jenss ,no it was haematologist that ordered scans as I saw him 2 weeks ago for bone marrow. He has asked me to come back I would of thought that he would just wait for me to see lung specialist which he said I definitely had to see. Any way only got to wait until tomo.

[jenss in reply to blonde72]

Hi blonde, how did you go darl? I hope you have a good weekend. Take carexx

[blonde72 in reply to jenss]

hello everyone ,lung specialist still don't know he wants to send me to eye specialist and rheumatologist he said sarc can be in the eye ,so over it, pain all the time and breathless, I am wondering if I can have sarc without nodules,dr said they found free fluid in pelvis which could be causing all the pain no one knows he wants me to trial pred to see if it makes a difference but side effects are dreadful !!!.help

[jenss in reply to blonde72]

Hi Blonde, sorry to hear you still have no diagnosis. Yes, as I had suggested earlier sarcoidosis can affect the eyes so it is good that you mentioned your eye symptoms to the lung specialist- and sorry that you need to now see another specialist. However, the eye specialist will hopefully be able to confirm or deny possibility of sarcoidosis. I know it can feel like a never ending story.... Did you see the haematologist again and did you talk about the chance of recurring cancer? Regarding the prednisolone yes it should be avoided if possible, but for some people it is a life saver. So, although there are possible side effects I am sure your dr has weighed up the advantages and disadvantage and thinks prednisolone will help you. So don't be afraid of it and hopefully you will feel better taking it. I don't know anything about the free fluid, but hopefully it will "clear up" - what does the dr say that is likely due to? Dear Blonde, please persist with seeing a few more drs so that they can figure out what is wrong and you can get some help. Take care, have a good Christmas and all the very best - especially better health- for 2015. Lots of lovexxx

[blonde72 in reply to jenss]

well I have felt good up until now, I am starting to having sob the last few days and pain again in left side, still have had know answers don't know what to do just took puffer dr gave me last year. When I saw lung dr around November, he said something could be brewing but have found nothing ,should I not do anything and just wait and see what happens.