Sarcoidosis - not enough care and attention given to sufferers

Poor Linda they've got more than an armful there ha ha! Seriously that's an awful lot of bloods to take and not be able to give some sort of diagnosis. I really think it is worse for you because you don't know and the awful l worry that brings with it. I still think it is Sarcoidosis and definitely not TB. I will be very surprised if they tell you it is. There again this is the other thing that annoys me about doctors. They seem to think if you have one thing wrong with you then you can't have something else wrong as well. It's ridiculous. It is more common to have more than one thing wrong with you than it is to have only one thing wrong with you. It must make their lives too difficult to have to treat more than one illness at a time. Why else would they write in their surgery "only one or two symptoms will be dealt with at any one appointment!" It is appalling in this day and age for them to think like this but they are given too many patients per doctor and can't cope so that is why we are allotted only 5 minutes maximum per appointment and not allowed to tell them all our symptoms. Little wonder they can't diagnose!. I miss the old way of GP care. Can you not go to a different hospital in a different district for a second opinion? It is your right to ask and be referred like this you know. I understand you feel they are treating you well but honestly this has gone on long enough and stress is a main factor in a lot of illnesses so they are only making you worse.

Hi June,

It is great that you started this thread up and it is fantastic that is it growing.

So good that we can all share our symptons, feelings etc.

My sentiments exactly re people saying oh you look well though....famous old saying /Looks dont pity!

I have said to my family & friends so many times when they asked what the latest is with the results that I feel like a fake!

I also use that term - Good day / Bad day!

I get quite a lot of pain in my back - lungs area Also in my breast bone area, buy ive been told this is due to having enlarged lymp nodes on my glands which are in that area.

So yes you are so correct in basically saying this is all hidden pain/symptons which is so hard to explain to people. Regards Linda

Yes June....and I HATE needles. but seem to of had to overcome that fear now.

The only thing with having all these blood tests is that majority have come back negative, a few things flagged up like high calcium, low Vitamin D etc.

I am siding more to the fact of Sarcoid than TB, although the hospital did say last week it could be both.

I havent been back to my GP with any of this since I first saw the rheumatologist, so this is all being dealt with by the hospital.

I have to go back to the other hospital on Wednesday for the follwo up to my Thoracic surgery for the last biopsy, so may find out a little bit more. Regards Linda

Good grief Linda! they should have done the follow up on your biopsies way before this! What the Hell has taken them so long? They don't half drag their bums there! It's all wrong to leave you worrying like this. Yes it could easily be both Sarcoidosis and TB I'm just puzzled how they can come up with TB when you haven't been in contact with it???? I'm sure all will be revealed soon. At least I hope so for your sake. You poor thing - needle phobic and they stick you 38 times - you deserve a medal or at least a lolly! The high calcium is a strong sign of sarcoid although calcium levels rise for loads of chest related problems not to say other reasons too, including injury etc. Don't know your age but low Vit D can occur in mid life and you could be osteoporotic etc So many diagnoses for these two positive bloods flagging up. I wish they had been able to biopsy a portion of the lung that had granulomas in it then there would have been no doubt of the Sarcoidosis. Oh well fingers crossed for Wednesday. Let us know how you get on if you can and keep your chin up. I will be thinking of you as I'm sure everyone else will be too.

Sorry Linda I didn't spot your first post saying about the pain in your beast bone. Yes that's exactly what I get and it is down to enormous lymph glands. You see? more and more you have the similar symptoms to me. Why can't they diagnose Sarcoidosis? I'm so convinced now I want to come and shake them until they diagnose you ha ha!

I meant to say to you Linda that I had my biopsies and was told straight away while I was in recovery that I had Sarcoidosis. That was why I couldn't understand why they had not informed you immediately, one way or the other after your biopsies. Even if they were carrying out other tests on the biopsies - which they obviously are - they should have been able to say yes or no to Sarcoidosis.

WOW GIRLS,we are on page 2 we have have got the ball rolling.

June the reason it is taking so long is the fact they have not found the Tb bug, so are growing the cultures which takes 8 weeks. The doctor at the hospital rang the lab in front of me last week to see what stage they' were at, she was going to follow it up.

So basically cos nothing has jumped out of them as basically all the samples taken have been non productive this is why they are going down this Tb route now.

I am 57.

They now seem to be steering away from my lung and saying glands now.

Will keep you updated. Linda

June, I went back to the hospital a week after my mediathenoscopy , which is where they said they ,thought, it was Tb, but they did not have any confirmation of anything really as it was non productive.

I am glad to hear ( in the nicest possible way)!that you also get that breast bone bone, and yes that is where my lump nodes are enlarged, it's all too coincidental.

Which form of biopsies did you have.

Initially I had the EBUS, whereby they took 14samples...but wasn't enough to get a diagnose!

Hi Linda, I haven't got a clue which form of biopsies they did because during the procedure my heart went into SVT (supra ventricular tachycardia) and as the staff were running round like headless chickens I never thought to ask them. They did a bronchial lavage at the same time as taking the biopsies which is like washing the cells out of the lungs and then examining them. Unfortunately, because they had to get out quick they were not able to get a biopsy of the grossly enlarged lymph glands but they said because my Sarcoidosis was so obvious it didn't matter! I think we are on page two because I am so long winded about everything! Sorry guys. I live on my own and don't get to speak to anybody except once a week when my daughter comes round and I try not to burden her because she can't take it. She's been through so much with my health problems since 2006 I totally get why she can't take any more so I have to avoid telling her about how I'm feeling etc. She is my only carer because I can't even get Social Services to come out and assess me. I used to pay a carer to come twice a week (1 hour each time) but I just couldn't afford it any more and I wasn't prepared to pay for someone to sit having cups of tea instead of doing work! I'm fiercely independent but I've had a couple of nasty accidents lately so it is getting closer to me having to get help again. My daughter is trying to get me into sheltered accommodation but Social Services refuses to come out and see me so that I can start applying for a place. Now the legal people at my daughter's university have taken up my case and have demanded that a Social worker be assigned but to date nothing! I don't know why I cannot get any help. There must be a magic word. I have been assessed by the Disabled Living Allowance people that I am in the high mobility component area and the middle care component but that doesn't seem to make Social Services think I need help. I worry that I will become one of their statistics one day and be found dead and alone in my flat all because they couldn't be bothered to come assess me. I took one very bad turn last July and collapsed out of my wheelchair and onto the floor. Luckily I was able to dial 999 and the police and ambulance service broke down my door to get to me. The ambulance people were dreadful to me and accused me of being an alcoholic! I don't even drink! I was devastated and put in a complaint about them but because the police said they didn't see or hear any inappropriate behaviour the case was dropped! I so hate this place. I have never lived in such a city where people are treated worse than animals. So now you know why I get so animated about care etc Look, I've done it again Rabbited on and on! Sorry!

Hi June, firtsly don't you dare apologies for being long winded, thats the reason we are on here so that we can hear/learn from each other.

So do you know if it was the EBUS - camera down throught or and incision for your biopsy?

I hear what you are saying re your daughter and not wanting to be a burden, but you do really need to tell her how you are feeling from time to time. My daughter is married but has been a gem, shopping, appointments etc. I live with my husband and one of my sons, but find it better that my daughter comes to appointmenst with me, and it helpd that her boss is my best friend!

I also have another son who I see regular as he works for the family buisiness, he has 2 girls 2.5yrs and 6 weeks old, but I have been very restricted in seeing them with all this going on and they live an hour away, and of course I am not able to drive now with my bad eyesight!!

I think it is disgusting how Social services are treating you....especially when they waste so much money in other avenues. Think we all know what the Magic word is dont we......mmmm.

Where do you actually live? It is so sad to hear what you are going through June...so unfair.

Do you mind me asking if you own your own home and do you have more than one bedroom at present., as in London they are doing a scheme whereby if you have surplus bedrooms they move you with a cash incentive and mainly if over 60 into sheltered housing, as that has just happened with my brother but he was a council tenant.

He was not assessed just met the criteria.

999 call - how appalling and what digraceful treatment you got, very convenient that they all stuck together there then.

You and your daughter need to keep badgering them about getting you accessed and getting you moved.

You can rabbit on as much as you feel, a good rant does us good and as you say it is a bit of company for you so feel free, I am here to listen.

Keep strong, think positive. x

Sorry I didn't explain very clearly. My daughter is amazing. She comes to all my appointments, tests, etc but she was ill herself for several years, she had breast cancer, skin cancer, endometriosis in several areas not just her womb and polycystic disease. She got hooked on the pain meds and had to battle her way through that all on her own as the doctor's idea of help was to prescribe her more. Anyway she finally got through it all and ended up having a total hysterectomy which improved everything dramatically, but obviously the psychological scars are still there and when I got sick it all got too much for her for a while and she asked me not to tell her when I was bad as she just couldn't deal with it. It's very understandable. I do talk to her about it sometimes but I can see the strain in her eyes and really wish I could say when I'm not well but instead I have to keep it to myself which is hard sometimes because it is frightening when things get bad and I don't have anyone to turn to. I know she wants to listen but it upsets her so much and I don't think it's fair of me to do it to her when she is just getting her life back herself. She's super supportive when it comes to my appointments and tests and she has insisted that she deals with all my paperwork now (form filling, fighting with the council for help with rent etc) I rent a one bed flat in Glasgow (which I hate Glasgow I mean) which is supposed to be wheelchair accessible but isn't as I can only just get my electric wheelchair through the doors. At least it's on the ground floor. I lived in a 2nd floor flat for ages and obviously couldn't get out as there was no elevator so became a prisoner in my own home for 3 years. I did get a Social Worker to visit one time when I lived in that flat. He spent 30 minutes telling me how bad his life was as he had a disabled son who would have to change schools because he had reached his 16th birthday and then told me I couldn't get any help because at 57 I was too young! He left and that was that. When I managed to get my present flat my new GP was very worried about me because I was so upset at not getting any help so she sent an Occupational Therapist from one of the hospitals to help me. She was very nice but could only offer me a raised toilet seat and a bath chair. After a few weeks she was told by her supervisor to sign me off which she did! So the struggle goes on and I do worry if my condition continues to worsen what I will do. I was told that I needed a riser/recliner chair as I sit in my wheelchair 24/7 and my spine etc is killing me as I have osteoporosis and arthritis but who has that kind of money to buy such a chair and no one is going to give me one? The housing association I am now with promised to put in grab rails and to widen the doors etc but it was all empty promises and they did nothing. They even charge me for services that I don't receive such as an electronic door opener that I don't have but nobody listens and having tried lots of avenues I am at the giving up stage. My last hope is pinned on the University's counsellor who my daughter sees. She has already written to the Social Work dept but they ignored her so she has sent a threatening letter so we will have to wait and see. Yes it was a bronchoscopy (camera down into the lungs with biopsies and lavage) that I had, but I don't know what else they did with the samples other than looking at them through a microscope

Hi June,

That is totally understandable re the situation with you daughter.

Life is so unfair when people get so much thrown at them!

Glad to hear she is so supportive.

Your housing situation is unbelievable and totally unfair, this behaviour is unjustified, just not really acceptable. Is it worth speaking to your Gp again and maybe your MP - worth writing an email to him at least..

Let all these people know that you are now at the point of desperation, and you are not prepared to be fobbed off any longer. Hopefully your case will not fall on deaf ears this time.

Keep badgering away until they crumble before you do my dear.

Yes the 'new term' EBUS is a bronchoscopy. I had that first, then the minor surgery for further tissue ,samples. So they should have plenty now......

By the way after my appointment for my Thoracic surgery follow up my daughter is taking me to visit friends until Friday, so I may not be able to respond but will do on my return.

Hi everyone how are you? Sorry you are all having so many challenges but it is a help to talk on this site isn't it.

I have been off sick since Wednesday coughed up a little blood etc again, not a new problem though. I expect my manager will be interviewing me again! ..It's so stressful. .I know she would like me to leave , she said if I was to continue to be off a lot she would expect me to leave! She must have a lot of money as she doesn't seem to realise I work because I have to. .My new GP who I was back at today was a huge disappointment.

Finished antibiotic today, steroids another few days but I was so short of breath and blue this morning it was scary. A lot better after the steroids and a steamy shower. My GP asked if I was suffering from anxiety.. and my heart just sank.

He hasn't got a clue.

I'm thinking of trying Reiki there is a local therapist. I also ordered some homeopathic medication after talking to a therapist but can't take them until off steroids etc.

Why can't they understand? Why don't they believe? Well take care folks, I live in Kirkcaldy in Fife if you are ever in this direction, Lots of love and perseverance to all, Helen

Hi,

I am a 27 year old female, and was told yesterday by my GP that i may have sarcoidosis. I have probably had symptoms for a couple of years but the last couple of weeks have been very difficult. Most recently having sore swollen lymph nodes in my neck and Erythemea Nodosum, i've also had a extremely painful headaches for a week and little bumps on my scalp. I have been booked in for a chest x ray in just over a week, I feel like i've just got on a roller coaster but i'm too tired to get off.

Any advice would be much appreciated

thankyou