Sarcoidosis - not enough care and attention given to sufferers

linda39 · 2013-05-17T10:39+00:00

Hi Debra, I still havent been diagnoised - with anything.....as such. But the only people that got things moving for me was rheumatology who then passed onto respiratory then thisngs moved very fast.

ailsa_june · 2013-05-17T22:32+00:00

Hi Debra, I'm really sorry to hear how dreadfully badly you seem to have been treated so far. This is my argument exactly - because a lot of the doctors really don't know enough about Sarcoidosis they don't know how to treat it. You really need to get pushy with your GP. It is your right to ask and be seen by, a specialist which you definitely need to do. While your sarcoidosis is cycling it's way in and out of your life and going on without treatment there is the very real risk of permanent damage. Whether this damage is to skin or internal organ, depending on what it is targeting most. I know it may seem like I am just another Sarcoidosis sufferer who is only going on her own experience, which to a point is true, but I was a Registered General nurse for many, many years so really do know what I am talking about. I am shocked to hear that they only did an X-Ray to confirm diagnoses. This is not enough. You should have had a lung biopsy to confirm. Sarcoid lumps are very much a symptom of Sarcoidosis. My God it makes me so angry to think that your doctor is so arrogant as to think he can tell you all this on the strength of a chest X-Ray. Not every Sarcoidosis sufferer shows an elevation in their ACE blood test The blood test measures the levels of angiotensin-converting enzyme. They are looking for a raised level. With me it was off the scale but very often it doesn't even show up in a Sarcoidosis sufferer so it is not always a good diagnostic tool. If it does show raised ACE then they can monitor when your Sarcoid is at it's worst. Depression is part and parcel of it because of the fatigue and the fact that your immune system is fighting your body and not fighting disease as it should. Anti- depressants are not necessarily the answer as they carry their own side effects so unless you are getting a lot of benefit from them I would knock them on the head. I think your depression is more down to the fact that you are not receiving the proper treatment and support you need and that is only going to happen if you put your foot down with a heavy hand and insist you are referred ASAP to a respiratory consultant. I say this because Sarcoidosis attacks the lungs first and foremost and as you are suffering from shortness of breath you definitely need this addressing. From there the respiratory consultant can refer you to a skin specialist if need be. You sound as though the doctor is blaming you for having tattoos and that is why you have a rash. That's rubbish. The Sarcoid rash is horrible and can get very uncomfortable and unless he gave you steroid cream then it's not going to help. If your doctor thinks it's not Sarcoidosius then he should be sending you for proper tests to rule it out. If you are just not getting anywhere with this doctor then change your doctor. You can do this, it is your right but I would make an appointment with him first and insist that you are referred. He has to do this and you can tell him so if he is difficult with you. By law he cannot refuse you. I honestly think, by what you have described, that he will be eating humble pie when you are diagnosed properly. The thing is, what if it isn't Sarcoidosis? Shouldn't he be finding out what it is? Doesn't he worry about being sued if you become seriously ill because he didn't treat symptoms that indicated something was wrong? No, Debra you've got to pull up your big girl pants and face your GP head on. Don't shout at him or be rude, even though you could be forgiven for both given his attitude! Write down everything that you want to say to him. All your symptoms and your worries and take the paper with you when you go to your appointment. Don't be fobbed off and if he uses medical words you don't understand ask him to explain clearer in easier terms. It is understandable that GPs don't know enough about the disease because it affects only 19 people in every 100,00. It is true that for a vast majority the Sarcoidosis will burn itself out within 1 - 4 years but for other like myself steroid or other treatment is necessary. Steroids carry their own serious side effects and are not to be prescribed or taken lightly. If your doctor knew about Sarcoid he would have realised that in some people Sarcoid appears to burn itself out but can reappear. You can go into permanent remission and never suffer again, it can keep going into remission and then reappearing again or it can be on-going when it does not respond to treatment. This last one is the most aggressive type and is the one that causes the most damage. Treatment can take many years and specialists like to have at least 3 years to try to put the Sarcoid into remission but it can taken much longer. The disease isn't a killer but it can leave damage in it's wake if left untreated. I hope this has helped you Debra. Please get back in touch if there is anything I can help with or explain for you but first and foremost, please make an appointment with your GP next week and spend this weekend writing out what you want to say to him so you can be clear and calm when you go to see him. Good luck, Regards, June

ailsa_june · 2013-05-17T22:38+00:00

Hi Linda, Sorry to hear you still have not had a diagnosis. I thought after the biopsies they would have had an answer for you. Were the biopsies negative or inconclusive? It is possible that you were suffering from Sarcoidosis but by the time they got round to testing you it has calmed down and isn't registering. Please keep an eye on your health and get back to your GP if anything flares up. Hope you are feeling better than you were. Kind regards, June

linda39 · 2013-05-18T09:19+00:00

Hi June,

It appears both biopsies have been inconclusive, hence I have to wait for the 8 week period for the cultures to grow.

I am still under the hospital so we should get to the bottom of it.

But I think you have a very good point, in as I feel that I did/do have sarcodoidisis, but now they appear to be thinking possibility an element of TB, hence they are treating that first as would be harder..

Hence it is possibly both.

Kind regards

Linda

Helen219 · 2013-05-18T17:05+00:00

Hi everyone I'm new to this forum hope you all don't mind that I am 63 yrs old. I work as a nurse and was diagnosed with Sarcoid in 1997 but had had an "episode 11 yrs before that, but it went undiagnosed until1997. Recurred twice and I am now stage 4. This may sound gloomy, but I did had 11 years symptom free until I got a Psuedomonis infection 5 yrs ago. I agree that GPs do not understand the effects sarcoid has on a person so they tend to treat or even not treat depending on their knowledge. I believe that my health has suffered due to poor management by my consultants/ 5 new ones over the years/ and my previous GP. I am wheezy just now with a cough and fever, sore throat, enlarged parotid gland in front of my left ear, chronic sinusitis, bronchiectasis, scarring in both lungs and I get recurring bronchitis. Recently developed skin problems, red burning rash eczema both feet, legs and face following a collapse with Clarithromycin in February. My FEV is about 220 and I am frequently breathless. Now you might say OMG but I force myself to keep on working. Cannot afford not to. My GP did not acknowledge the multiple symptoms. I am back on steroids and antibiotics. I feel down just now but reading this forum gives me the feeling of not being alone with this illness. My daughter is wonderful but I see the worry on her face every time I get so unwell and it breaks my heart. I was on long term antibiotics for about a year and it made me have a better quality of life but the latest consultant told my GP not to give me them unless I was ill, after the severe reaction to Clarithromycin, I feel that if I had been on them this episode would not have happened. I hope that you all go into remission soon. Like all of you I have read widely about this disease but knowledge is no good unless your Dr or Consultant cares enough about you to try treatments. Maybe I've been unlucky with mine. Love and good wishes to everyone

ailsa_june · 2013-05-19T21:05+00:00

Hi Helen, a big welcome to the forum. I'm 58 so don't be worrying about your age and you are definitely not alone. I firmly believe there are far more suffereras out there than get diagnosed because GPs don't think to test for it perhaps believing that their patient just has a chest infection, or skin problem or their favourite one "you have a virus"! I'm sorry to hear you have had a rough time of it with Sarcoid. If I had not been in a wheelchair with other health problems I would have carried on working too. Would not have had an option as the government thinks you should work unless you are dragging your coffin behind you! I too have had Sarcoid a lot longer than the recent attack which started in 2011 and is refusing to go into remission. I can't take high doses of steroids as it causes severe paranoid events. Unfortunately I am one of those people who is sensitive to most medications so it is always a bit of a nightmare when I am put on anything new. My specialist has decided to keep me on low doses of everything to avoid the side effects but it means that I'm not getting much benefit from the meds. I can see you GPs point of view not giving the antibiotics unless you have an infection as eventually you would have built up such a resistance that he would be stuck for what to give you. The antibiotics wouldn't have stopped your current attack but you should have been on long term steroids. Large dose first with a reducing regime and then finally a maintenance dose. Like you my lungs are permanently scarred so I cough a lot too. The sputum is so sticky and it is so difficult to expectorate it. You kind of get a little insight into what these poor cystic fibrosis sufferers have to go through. I look at my disease and always think there are worse diseases out therewith people suffering much more. Although it is hard to think this way when you feel like you are coughing up a lung! My daughter is my main carer and she too tries to hide the upset she feels when I am feeling at my worst and of course I am always trying to hide it. It's the frustration at having to fight for everything that upsets me most. Every time I go to my GP it's the "there, there" comments and the pat on the back of the hand like I am some neurotic person looking for attention. If I lose my temper I get told to "calm down" and they offer me anti-depressants which they are promptly told what to do with. I'm not depressed, I'm just really angry for the shocking treatment we get. I can tick every single box for the symptoms of Sarcoid and add a few more too. At the moment it is attacking my nervous system so I've been put on Hydroxychloroquine but it's not doing anything for me. The doctors seem to forget it's not just the Sarcoid that is the problem but all the other problems it causes. I even have stress incontinence due to the constant coughing but no one addresses this problem. For this one I got "Really? How long have you had that for?" Every few weeks I get several days of nose bleeds. No warning just whoosh. It's embarrassing if you are out and it happens. I don't mean to be awful but I see the adverts about people being told they have cancer and about the need for MacMillan nurses. They do a fantastic job but I wish people would remember there are other dreadful diseases that are just as bad as cancer and the people need just as much support. You and I obviously have the chronic type of Sarcoidosis and will probably never get full remission so all we can do is make the best of a bad lot. I've started to keep a diary and would like to eventually hand it over to my consultant who has a great interest in treating Sarcoidosis. Perhaps the things I tell him will help the treatment of fellow sufferers or even make GPs a bit more aware of the problem who knows? In the meantime I just tell people to be pushy with their GP and fight to be heard as it is the only way most of us will ever get treatment. Try and keep your chin up Helen and remember you are not alone and I'm sure I speak for everyone on the forum when I say we are all here for you and each other. Keep in touch and feel free to have a good old rant here on the forum when you are feeling down, it might help make you feel better. It's not moaning it's just helping to get it off your chest (pardon the pun ha ha!)The same goes for everyone who joins the forum. You know what they say "A problem shared is a problem halved". Kindest regards, June

ailsa_june · 2013-05-19T21:30+00:00

Hi Linda, TB? really? Have you been exposed to TB or visited a country where you might have picked it up? Have you never had the BCG vaccine? (although it only covers you for 10 years and most people don't get it renewed). TB should be easier for them to diagnose than Sarcoidosis. I still have a gut feeling that your sarcoid had probably peaked and was calming down when they did the tests and that was why it didn't show up properly. I know how frustrating and worrying it must be for you not to have a proper diagnosis but try not to let it get you down and don't let them make you feel as though there's nothing wrong just because they can't give you a definite diagnosis. It's not the easiest disease to pin down unless it is doing a total song and dance with your immune system not to say it can mimic so many other immune problems. At least they will have been able to discount lymphoma which is probably why they did the lymph biopsies too and that's great news. I've got my fingers crossed that your sarcoidosis has burned itself out without treatment and that you will continue to improve. Maybe keeping a diary of your symptoms - what they are, how you feel, when the symptoms are at their worst etc will also help the doctor diagnose you better. You need to keep a close watch on your health even if it is going into remission as there is no telling when or if it will flare up again. Maybe you will be one of the lucky ones and never have another flare up again. The aftermath of a Sarcoid flare up takes ages to get over. The fatigue itself is one of the worst things to overcome I think because when you are tired everything is worse and this is fatigue not just tiredness. What are the next tests they are going to do and when? If they are thinking TB they need to get a move on so don't be shy in telling them to hurry up. Did they even do a quick BCG scratch test? Keep us posted on how you are getting on and come and have a rant if you are feeling down. Kindest regards, June

linda39 · 2013-05-20T11:29+00:00

Hi June,

Yes that seems to be the latest thing and a very big shock to hear it.

I was in Egypt for a week in November but it appears all the test for that are negative.

I really think it was Sarcoidis to beging with as all the symptons very similar.

The TB is now what they are looking at and treating but they havent ruled out both as yet.

Since I have been on the precautionary TB medication I have kept a diary everyday.

I am going back on June 26th whereby my cultures should of produced some results, meanwhile I have to go to see the nurse every 2 weeks.

I have had the TB tets to see if I have actually been exposed to it at anytime.

I have had 38 blood tets so fsar...so they have been on the case!!!

Kind regards

Linda

linda39 · 2013-05-20T11:29+00:00