Sarcoidosis - not enough care and attention given to sufferers

Hi Linda,

I just wanted to check that you know you should take Omeprazole an hour before you eat and then take the anti inflammatory. I didn't know this until I was told by a friend who has spondylitis. Although I still get stomach problems even with Omeprazole.

I've had sarcoidosis since the 1990s. I finally managed to get diagnosed in 2001, following years of trying to get my GP to believe my symptoms. I felt they had written me off as an hysterical middle aged woman. I finally got ill enough to convince them I wasn't making it up, but if they had reacted sooner I think I wouldn't have such bad fibrosis. Unprovable, of course. I have the chronic progressive form of sarcoidosis which typically has a long, slow onset, rather than starting with an acute attack. The sarcoidosis has now also caused bronchiectasis and small airways disease. Fortunately, all three conditions are stable at present, so I really hoping I don't have eye sarcoidosis.

HI MM,

That is good to hear re you havent had any side effects.

I have rung the eye hospital 3 times and left messages still not got back to me.

Hi June,

That is very odd re those personal message hence I wanted to respond when I did finally recieve them as I am sure you are aware I wouldnt just ignore any messages of any kind.

Good to hear that you are the drug too as you are the expert of all medications....

I am not sure if this is the one I will end up on it all seems a bit risky to me with my eye problem.

I am just gratefukl I have been able to get advice from you all on here

Hi DD,

thank you for your advice, it is crazy how we all tend to have to find out thinsg for ourselves.

This site is a gem,,,,at least we get honest, first hand, spot on information.

Linda,

Just keep pestering them, as the drug takes some time to work, if you can go on it then sooner the better for you. There are less possible side effects than in any steroids..

I agree with you, this site is a gem. Sometimes when I feel that nobody understands and listens , I can just post in here, you all don't mind a wee moan. Also feels like often you are the only people in the world I can relate to and who might be able to provide some advice. Thanking you all for it, especially June, who I believe first started this discussion.

Love,

MM

MM

Would you believe I rang the eye hospital yet again today

Still no joy I rang a few different numbers passed onto another department

I'm the end I was given the number and that appeared to be the same office that I had been ring already

Only to get the answer machine yet once again. I left another message

But if I don't hear tomorrow I am going to get back onto my Sarcoid consultant as she may have more luck.

Basically they should of made the contact anyway I think

Totally agree this is such a great outlet fort us all

Oh Linda, thats a shame. I hope you'll get hold of them v.soon. I think consultant would probably have better luck Hoping for the best for you x

MM

Hi Linda,

I'm sorry to hear you are having such a problem it may turn out that the eye consultant is on holiday but they should have at least had someone to man the phone. The only suggestion I could come up with is to try and phone the eye hospital's front reception and then ask to be put through to the specialist you want at least that way you should be able to speak to a living person and not an answer phone (I hate these things. So impersonal!)

Thank you also to you and MM for your kind words about the site. When I started this forum I was desperate to hear from someone else who had this disease and as I was still reeling from having first been told it looked like end stage lung cancer I also needed support. The other reason I started it was because I realised there was little support and even less help for sufferers and the best way round this was to reach out to fellow sufferers. Had it not been for all the members who reached out to me and then to each other as the membership grew, I would have felt very alone. Like I've said in the past, there is always someone here when a fellow member is feeling low or confused about a medication, test or treatment. I couldn't have asked for a better group of members to come together as one. This forum would be nothing if it wasn't for each and every one of the members. I often go back over all the posts and find it heart warming to see how each member has started by telling everyone how and when their illness started and about the symptoms they are experiencing and wondering how others are coping. From this each of us seems to gain strength and go on to offer support and advice to the other members as though they are overcoming the darker days because there is someone out there to turn to. I just wish I could give an encouraging 'Hug' to each and every one of you but the best I can do is send a HUGE THANK YOU and a virtual HUG and hope that you will all continue to give your support and knowledge to others.

Virtual hugs all round { } [ ] [ ] (I know they are brackets but they are suppose to represent arms and hugs ha ha!)

Ditto, Well said June Just heartwarming and lovely xoxoxox

Hi MM....you know that song......... .Im still waiting......

I have had a hectic day today but I will contact my consultants secretary soon.

Hi June,

Along with ringing the eye consultants secreatry direct - albeit her ansafone.

I have spoke with 3 other popel all to no avail as they just direct me back to the secretary.

and a MASSIVE (((((HUGS))) back to you :-) xxx

Oh and forgot to mention I am finally recieving email notifications again, hence I am responding quciker.

Oh Linda you must be pulling your hair out now. Being stressed out with them won't be helping your health either. I imagine you are contemplating buying a sleeping bag and tent and camping out on their doorstep!

It's dreadful that you can't get to speak to anyone in the eye department. It makes you wonder if the eye department have changed the phone number and the front desk hasn't altered it's COM station. I hope you complain ++ when you finally speak to the eye consultant. It's bad enough having eye problems but now they are holding up your Sarcoid treatment and that is definitely not on. When you speak to them, make it very clear that you have been suffering for no other reason than waiting to get in touch with them so that they can clear you to start a medication that will almost certainly bring you a lot of relief. I honestly hadn't realised how much relief I was getting on the hydroxychloroquine until I missed taking it for two days. Oh my goodness! Did the pain return 10-fold? I was almost in tears with the pain in my joints and my hand use was reduced back to almost as bad as when my carpal tunnel was first diagnosed. I hate to think what would happen if I were taken off it all together if that is what I felt like after 2 days of not taking it. At the moment I am back to knitting, making my greetings cards and of course typing posts.

In all honesty the only thing the hydroxychloroquine hasn't made much difference to is my lower spine and hips but in fairness to the drug I do have osteoporosis in my lumbar spine and being in a wheelchair 24/7 doesn't help as I get little or no exercise. Also my weight has soared on the steroids and again the immobility doesn't help reduce the weight although I have managed to lose 1/2 stone over the last month so I am pleased with that and am hoping I can continue to lose some weight.

I almost forgot to tell you all after my moanings about the Blackwood association threatening to evict me over outstanding rent, the officer in question called round a few days ago on a routine check. This is the first time I had met him but after the run in I had with him on the phone I was really worried how the visit would go. Luckily my neighbour had called in to get her mail so I had a witness if things went pear-shaped. I realised he was as nervous as me but he acted very respectfully and I used my wit to keep the visit light. I'm a great believer in being overly nice when in a situation that could become argumentative. As they say, you can't argue with nice! We were almost at the end of his visit when I said to him. "Apologise to me, please." He looked a bit shocked but said he was sorry. I then explained to him that I had wanted him to apologise for the way he had spoken to me on the phone and had made me positively ill worrying over an eviction that wasn't even going to happen. It turned out that he had not been given accurate information either and the problem was down to the previous Blackwood's officer who hadn't been sorting out problems properly etc. She has just been given a higher position too! Why is it companies seem to reward poor work? Anyway at least I think the troubled waters have been calmed for the time being and the new officer has promised to get all the repairs done that I'd asked for a year and a half ago! He even said he would try and get us somewhere to have tenant's meetings as well as our own group meetings as this housing area seems to be the only one that doesn't have a common area where neighbours can meet up.

I really appreciated the support you guys gave me when I was so upset and worried about the possibility of being evicted. It really does ease the worry when you can just get things off your chest doesn't it? Actually I also received a message from the law people at my daughter's university who said that there was absolutely no way they could have evicted me anyway and that they were prepared to fight in my corner pro bono! Thank goodness it never came to that!

Hugs all round xoxoxo

Hi Linda,

Why don't you try looking at the hospital's website or the Dr Foster website which lists all the hospitals and consultants, or just do a Google search to see if you can get hold of the consultant's email. I did that to find the contact details for a consultant and I got hold of both her direct phone line and email. And I did get a reply from her.

I also want to say many thanks to June for setting up the forum. It's both useful and comforting to be in contact with others going through similar things.

Di

Totally agree with your all. This forum is brill. It's great how info is shared & support is given whenever it is needed xx