Sarcoidosis - not enough care and attention given to sufferers

Hi everyone and sorry I've not been online lately. Unfortunately really not well just now so please forgive the short message. Just didn't want you to think I'd forgotten about you all. I'm hoping you are all well just now and able to enjoy the good weather. A huge welcome to you Morag and hope you find some support on this blog.

I'm off to the Marie Curie Hospice on Tuesday so will try and get back to you all soon. Kindest regards, June

Morag, you keep your chin up love. I know it's all kinds of scary when they are throwing tests at you right left and centre and giving you all sorts of "what it could be" It's difficult to keep positive but we are all here to support you and please just post your feeling - scary or not as it really helps to share. At least the CT scans give a clearer view of things although sometimes they still have to delve a bit deeper as Sarcoidosis is a bit of a bugger to diagnose 100%. It mimics so many other illnesses too and has an abundance of symptoms although a lot of people only experience some while others get bombarded with symptoms. Try not to get too stressed as I think Sarcoidosis just loves it when we are stressed and symptoms get worse (at least that is my take on it anyway).

That sounds like a great job you have. Really super interesting I think. Like a CSI of bug community ha ha! Best of luck for your results. Will be thinking of you and of course everyone on our special little community here.

Kindest regards,

June

Linda, don't be worried sweetie. No one is going to think you are a fraud because you are feeling better. I am delighted that you are feeling better but because Sarcoidosis takes 2years2 not months to totally burn out and can flare up again, there will be no doubt that you have suffered from it even though they have taken their sweet time to get back to you. I totally get what you are feeling though but the evidence will still be there for them to see. You just keep looking after yourself. Really sorry I haven't been online to offer anyone support (although you were doing a super job all round thank you). Suffice is to say I am back on steroids, hydrochoroquine, inhalers etc etc and my specialist has packed me off to the hospice on Tuesdsay so will fill you all in at a later stage. I just feel really guilty for not at least trying to offer support to you all in the last few weeks. I'm afraid I felt so crap and then depressed on top of it all I couldn't even face typing a letter. Anyway I'm feeling less self-centred now and delighted to see out little community growing although disappointed at the same time as it means there are more people feeling unwell with Sarcoidosis - can't win either way can we? I am so pleased that people have found us though and do appear to be feeling that we are all supporting each other. It makes me feel so glad that I started this even though looking back I seemed to be ranting a lot at the poor doctors!

I'm still having terrible trouble with my GPs and mostly their dreadful receptionists. I wish to God they could experience this disease for just 5 minutes and then perhaps they wouldn't treat people with such disdain. Anyway chins up everyone. The sun is out and Andy Murray won Wimbledon. What more can one ask for ha ha!

CSI, I wish :-) Work freelance; editing scientific papers for foreign authors before they get published in English language journals; and doing customised indexing of already published papers for Drug companies so that they have records of the information they need for further research and monitoring side effects and whatever else in their own databases. Can be interesting but at the same time can scare the wits out of you. Because of course until this all came up the only times I've heard of sarcoidosis tend to be in all the worst case scenarios because the more common outcomes aren't interesting enough to write about.

For me, its good to know there are other people out there with the same condition and coping amazingly well, like all you guys.

Sorry Linda it should have read Sarcoidosis takes "years" not months I fogot to press the shift key and ended up with a 2 instead of a ""

Linda, I'd say its a good thing if you're having a spell when you feel better. And doctors who think otherwise need to be taken out and shot.

June please look after yourself. You've already been a big help to me just by being a friendly voice in the ether!!!!!

I still think your job is interesting! I'm sure reading all that material must certainly boost your knowledge too.

I think because so little is known about Sarcoidosis and because they don't know what causes it and don't have a cure for it then little has been written that isn't repeated as opposed to new info and research being published. Of course research being so expensive Sarcoidosis falls way down the line for getting any monetary input for research too. Luckily more people suffer the lesser acute type that burns itself out, than do the chronic long term sufferers who also end up with their illness causing other extended problems. It still doesn't detract from the fact that it is a horrible disease whether acute or chronic. As usual the Americans have done far more research etc on Sarcoidosis but I imagine that apart from having more money to do this they also have more sufferers because they have far more people with a greater mixed ethnic community than us on our little island!

Thank you for your kind words Morag. You might get a fright seeing me through the ether though ha ha! Hey it might scare the disease out of you ha ha!

I wish we all live close so we could all go out and have a coffee together. What a fantastic support team we would all make I think.

I'm dead proud of all of us. We do cope really well and the support each of us offers the others is so obvious it was just what I hoped for when I wrote the first (soapbox) blog. You guys have done it proud and hopefully you will all keep coming back even when you get better so that there is always someone here to throw a life-line for the new sufferers looking for support.

A GREAT BIG HELLO TO YOU JUNE.

I was so please to see you had posted, I was truly worried about you.

But there you are again [albeit maybe only briefly at the moment] full of kind words of encouragement and support.

Sorry to hear that your GP is no better for you.

Good to hear that you are getting some care from other avenues now.

Hope you get full care and support that you need at the hospice.

Take care, always in my thoughts. x

Morag,

I had a little chuckle at you comment to me.

My family are so frustrated with the hospital now...and say I am being used for their guessing game.

But I do remind them I have had such good 'attention' for the want of a better word.

Sometimes I feel it has been better than if I had been private!!!

Hi Ladies,

Well I thought I would tell you my latest.

On seeing the TB doctor 2 weeks ago, this one finally 'admitted' that I don't have TB but would not discharge me until I had seen the Sarcoid doctor to which I had already got an appointment.

However he cut my medication down to 2 tablets a day - which had started at 14 a day! He wnated to do this as a precaution.....although neither of my biopsies had any signs of TB.

I 'finally' went to see a Sarcoid doctor on Thursday.

She was quite thorough and said it was 90% Sarcoid......here we go again!!!

But she wanted to do some further tests -that I hadnt already had....ACE, LUNG FUNCTION, 24 HOUR URINE, CT SCAN & MORE BLOOD TESTS.

I am due to go back to her on 29th August.

She is very concerned about my calcium levels and warned me of kidney stones....great how much more can I have thrown at me.

She did also state that due to me feeling well that I may not even need treatment!!!!

Couldnt believe my ears when she said this is a case of "the doctor not listening t the patient"

Think she was a bit shocked of how aware of it all I was........she said I am very clever at spotting the signs and knew my own body very well.....I said well a lot of research.....didnt mention my friends on her, kept that one under my belt!!!!

Although I feel I have 'finally' got a diagnoises, although not 100% confirmed of course! I did come out of the hospital feeling I had taken a backward step and the tests were staring all over again.

Oh an another interesting thing she has asked me to take part in a survey/campaign, so as to get Sarcoidosis more recognised.....I said I would be more than happy too!!!! Hooray a breakthrough.

I am going to see the Rheumatologist tomorrow and the TB doctor on Wednesday and I think I will get discharged from both, bit 'definitley' the TB as they were just basically waiting for the Sarcoid doctor to take over my case!!!!

The TB clinic has been so many appointments as I had to also see the nurse every 2 weeks.

So that is where I am at, at the moment.

I can't wait to have a period of appointment free, since November I have only had 4 weeks without appointments, whereby some weeks I have had 3.

My whole life has been on hold as I have been unable to plan anything longer than 3 days.

Well think I have covered it all......

Best wishes to you all.........Take care. x

It was high calcium levels that got the renal consultant wondering about sarcoidosis in my case. But despite having them there's no signs of stones on the x-rays he got done. Waiting to see what CT scan says, just waiting for a date for that. He also did a test for ACE but he thinks it'll need to be repeated because I've been on an ACE inhibitor, its just yet another blood sample so how will I even notice the difference.

Is there an unwritten law that says whenever you enter a hospital building for a clinic they must take blood from you, do you reckon? ;-)

Here's hoping you manage to get a bit of time appointment free!!

Oh poor Linda. I don't know whether to laugh or cry for you, love. You must be feeling a mixture of relief and frustration all at the same time. I don't know what to say except that I'd like to get hold of your doctors and tell them to get off the fence and make a concrete decision once and for all. They really don't understand the stress they put their patients through by all this dithering do they? I had to smile (although it was a rye smile!) at your consultants comment about you knowing so much about it. My God! after what they have put you through it is a case of you having to find out for yourself because they certainly weren't keeping you informed! It's a shame they didn't read as much of the research as we all have. They might manage to make a more informed decision about your diagnosis! I'm so sorry that they are putting you through all the tests again. On the slightly brighter side, I can only hope that they have learned from you and that the next patient through their doors presenting with similar symptoms will be diagnosed quicker. It is fantastic to hear that she has decided to do the survey on Sarcoidosis. She might want to email other health authorities with her findings etc if she gets a good response. I really feel strongly that Sarcoidosis needs to be brought to the doctors attentions across the board then it might cut down on the unnecessary TB treatments and over testing of patients. The unnecessary treatments themselves carry too many side effects (and expense) so you would think they would want to avoid treating people if they didn't need to.

If you ever get away from all these appointments, Linda you will be feeling like something is missing! You will be running round shout "FREEDOM" when they finally leave you alone - just don't go lifting your skirt like in Braveheart ha ha! "You can take my blood but you'll never diagnose me with Sarcoidosis!" ha ha!

And on that crazy note (must cut down on the medication!!!) I wish you all a good day

Love and support to all

June

Totally agree Morag, how mad is that to take bloods for ACE when you are on ACE inhibitors - it just doesn't make sense!! So unless your ACE is so off the scale that it actually registers despite the inhibitors it's a total waste of a test. According to my consultant only a few Sarcoidosis sufferers show an increased ACE result so I wouldn't put too much faith in the result lending much towards a concrete diagnosis.

Yes I think the unwritten law is "All ye who passeth through these doors must be prepared to giveth a whole armful of your life's blood" although it is probably written in Latin and that is why we don't realise it is the law of the hospital ha ha!

I hope your calcium levels come down soon. You must be really worried about getting kidney stones you poor thing. Not a nice prospect at all. Funnily enough my son's girlfriend has just come out of hospital having passed several kidney stones. Hers were more like gravel than stones but she was in tremendous pain passing them, poor thing. Not surprising when you think how tine the ureters are. 100 times more painful than giving birth!

Take care of yourself and drink plenty water as they say!

Kind regards,

June

Hi June, I agree that it is laughable.....now but not a few months ago....

I think that this survey/campaign is going to be national.

I have been to the Rheumatogist today...thinking I was going to be discharged, but alas no he wants to see this through and see me in 3 months, so thats not too bad.

He couldnt beleive how well I was looking now [along with a little colour from the sun], he asked if I had been away...I wanted to say you are joking how can I with all these appointments!!!

YES FREEDOM....sounds a blissful sound!!!!

Hope all goes well for you this week.

Take care. xxx