Sarcoidosis - not enough care and attention given to sufferers

Hi Linda, thank you for your wishes. I had a lovely time. We went to a place called Luss which is on Loch Lomond. We had a light lunch in the Lodge at the visitors centre. It sits right beside the Loch so we had a beautiful view. We even watched some people brave the icy waters of the Loch! I got stuck in the disabled toilet for about 20 minutes. It was tiny and couldn't accommodate my wheelchair until they removed the baby changing table! Then once in I couldn't get out. We had to dismantle parts of my chair before my daughter finally managed to squeeze me out. So embarrassing! Apparently they are about to change management and that sort of thing will be dealt with but I have to say I'm astonished they have got away with it for so long! I have to say that I thought I was feeling the worse for wear these past several days and sure enough both my feet and ankles have exploded in Sarcoid rash and I'm feeling terribly sick and headachy too. I feel like hibernating (but then I sleep so much anyway ha ha!) I'm not due at my appointment until the 28th of this month but if things get any worse I think I will get them to bring the appointment forward. I'm so lucky with my specialist and he tells me to phone him if I need him just wish my GP was on the same wave length. He doesn't even read the specialist's letters or follow his advice for me. They are supposed to be keeping a check on me with the meds and check my bloods regularly but no, not one sample has been taken! Will have to go kick some butt ha ha! You are absolutely right they do always check for TB etc first. They didn't check me for anything else but Sarcoidosis because my Sarcoid was so obvious and off the scale according to the specialist. So I'm sorry folks totally my mistake when I ranted about them testing and treating the Sarcoid first. They are almost always going to test and treat for TB and rheumatic infections etc. first. I guess I should count myself lucky that I didn't have to go through what the rest of you did regarding treatment and tests for things I didn't have! I'm pretty sure I must have been glowing in the first few months though given how many scans with injections of radio opaque medium I had ha ha!

Hi Helen, thanks for letting me know about the swallowing and choking. I didn't know if it was part and parcel of the Sarcoid. That's why I love this little forum - we are able to help each other because a lot of the symptoms are not catalogued on Sarcoidosis websites. I too get sore mouth from meds. My inhaler causes thrush and I get a sore mouth from sleeping with my mouth wide open (it must be a sight - glad I don't share a bed ha ha!) Have you tried swilling with bicarbonate of soda to neutralise and soothe your mouth? It might give you a bit of relief while you are waiting for the garlic to do it's stuff. The prednisolone caused me to have a psychotic break. It was dreadful so I'm not on it any more, but I think I am going to have to reconsider going on one of the chemo drugs if the present cycle I'm having gets any worse. With the explosion of Erythma Nodosum rash and very swollen ankles I'm kind of waiting for something else to happen. My specialist is loathe to try because I am one of those people who are super sensitive to a lot of drugs. I am tolerating the Hydroxychloroquine but he put me on the low dose of 200mg so although I am tolerating it, it isn't doing anything for me! Damned if I do and damned if I don't! I have to say that you do kind of know when the Sarcoidosis is cycling around don't you? You get used to the signs for certain things which is handy for being prepared I guess. Anyway I hope you get some relief from your painful mouth soon. You really are having a time of it just now. I hope you have stopped coughing up blood too. I know you need to work but try and take it easy, please. Kindest regards, June

Hi Izzy, hopefully the x-ray will show something. Is it a scan or just a straight chest x-ray they are doing? Your headaches could well be down to Sarcoidosis to. I'm sure the other members will agree with me that headaches are certainly one of the symptoms we all suffer with. I can totally understand how worried you are, especially as you have had the previous diagnosis of idiopathic intracranial hypertension. This is why I say that Sarcoidosis mimics so many other diseases I suppose it is little wonder that doctors sometimes misdiagnose it for something else. and of course we don't just get one ailment (if only) so we also have to be careful not to blame every symptom on Sarcoidosis even though it's symptom list seems endless! I truly hope you will get some answers soon or at least have your main worries eased because worrying can make you ill too. You and poor Linda are in the same boat - needing answers and getting none. Try and keep positive (I know it's really hard when you are feeling so unwell) and remember we are all here to support you. Kindest regards, June

Hi JUNE, Glad you had a lovely time yesterday sounded lovely, apart from the disabled toilet problem, how awful, bet it made you quote anxious.

Hope it wasnt the stress that has caused ypu to have a flare up.

Maybe the 28th is too far away for you to wait, why don't you call to see if you can bring it forward, or maybe if you give your specialist a call he may bring it forward for you anyway!!!

I seem to have had a good few days and kind of felt 'quite normal' I am wondering if this is the results of taking me off of the 3 tablets a day. My appetite has also improved...its amazing.

Hi Linda, I think it probably is the fact you have come off the medication. The TB meds are horrible with the side effects. It's no wonder you have had no appetite you poor thing. I'm so glad you are feeling a bit better. I've got my fingers crossed tight that maybe it's also put you into remission. You never know. I don't think it was the stress of being stuck in the loo I managed to keep more or less calm. Well my daughter said I did ha ha! No I've been feeling the Sarcoid getting worse again over the last few weeks. This morning I coughed up a huge plug of green mucous so I'm betting an infection might be on it's way too. I've felt so down in the dumps recently too. Crying for no reason etc. I know there are loads of people worse of than me but I'm only human and sometimes it just gets too much. My get up and go just isn't there at the moment and I have no motivation because I'm so tired all the time. I think being stuck in the wheelchair doesn't help either. I used to be a keen hiker and rock scrambler although I wasn't doing much after the sudden death of my husband. The thing is, it's one thing to stop hiking because you want to but totally another to have all activities denied because you are in a wheelchair. I've got no friends and no way to make any so too much time alone isn't healthy. It's probably why I yap so much on here ha ha! I think it's one of the reasons my daughter is so keen for me to go into sheltered accommodation too as there will be a common meeting area where I can hopefully chat to people. Unfortunately Social Services are still ignoring the many letters that have been sent. It's unbelievably shocking that they just ignore pleas for help. I understand now how children who should have been taken into care wind up dead or battered. One nurse told me at the hospital that Social Services are swamped with people who just think it's alright to drink too much, eat too much of the wrong food and to shoot up on drugs and to hell with the consequences. She reckons that is why they have not come to help me because there is no one available. I just don't know. I use my disability money to buy equipement to help myself but disabled equipment is so expensive. Hundreds of £s for a raised toilet seat or a seat to lower you into the bath. Even a special gel cushion for my wheelchair would cost £239.00 so instead I settled for the £41.99 foam one which isn't any good really. I think the sale of disabled equipment is a racket. The items are ridiculously priced and way out of r3each of most people and yet the government wants to cut our benefits. I always think if I am struggling how must someone who is in more dire need be feeling. It doesn't surprise me that severely disabled people decide to exit out. I doubt they will ever change the law on the right to die or for assisted death but I bet if the government had it's way we would all be euthanased! OMG I'm on a right moan today aren't I? Sorry about that! I'm off to slap myself into normality and pull my big girl pants up ha ha!

Hi June,

Firstly please stop apologising for ranting on and moaning, you are a great asset to this forum with so much information to give.

Also you are well within your right to have a moan, I am disgusted at the way you are being treated and dismissed, it is truly disgusting.

I am not sure as to who els that you can contact, its appalling.

With regards to the medication ive been on putting me into Sarcoid remission, do you think that is possible? As I really feel 90% back to myself these past few days.

Hiya,

I am just going to be having a straight forward chest x ray. I also seem to be feeling a bit better, the erythema nodosum has just about cleared up and my headaches are much better. My appetite is still pretty poor and i get tired very easily and sleeping between 10-12hrs a night which is strange for me as i usually only sleep about 6/7hrs. The Dr signed me off work for two weeks so it's not too much of a problem at the moment sleeping so much.

I will just have to wait and see if the chest xray shows anything up or whether it's just going to be another unexplained illness.

Hope that you are all enjoying this sunshine.... it does help my mood a little bit:-)

Hi Izzy,

So will this be your 1st chest xray?

I had 3 before they decided I needed a CT scan!

I too am feeling quite a bit better this week since leaving off 3 of the 8 TB tablets, my appetite is a little better.

As for sleeping I seemed to of gone back to my old pattern of waking at 6am...so annoying.

The sunshime is lovely but as I am feeling so much better I have been cacthing up on office work [run my husbands buisiness] and that has slipped somewhat over the past few months. I have also been doing housework...

I feel that I have had a transformation over night....I do hope this isnt the lull before the storm.

Hi Linda,

Yes this will be my first chest x-ray, think i had one about four years ago before i had an operation.

I hope that we both find some answers, even though i'm feeling a bit better this isn't the first time i've had unexplained symptoms.

Keep us updated on your progress

Best Wishes

Hi Linda, thanks for the support. It's much appreciated. You are right of course it is good to have a moan and get things off your chest. I'm frustrated enough with my health without them not helping. It actually took 9 phone calls 2 years ago when I tried to get Social Services to come and help me. They kept telling me that I had contacted the wrong office for my area. Then I would be given what they called the correct number only to find it wasn't. I was sobbing by the time I dialled the last number especially when they gave me the 1st number I had started with as the correct one. I just gave up then as I was convinced it was all intentional because no one wanted to help.

Yes I absolutely think it is possible that the meds have done that. It is also possible that your Sarcoidosis has burned itself out all on it's own. There is so little known about Sarcoidosis really. No one knows what triggers it, although it is speculated that being exposed to pollution whether chemical or atmospheric can cause the immune system to fight your body instead of the pollutant. Also it's thought that a traumatic experience could trigger it. Equally Sarcoidosis quite often burns itself out without any intervention. Sometimes the person remains in remission for life but sometimes they have constant recurrence of the disease. Not enough research is done but as my daughter pointed out to me today (she's just doing a research thesis for her degree at the moment) money is only available for the diseases that kill and as Sarcoidosis is not really a killer disease no matter how dreadful it can leave us feeling and therefore no money is available for the research for it. The only time the disease is fatal is when there is heart involvement which thankfully is very rare but not unheard of. It's a bit like cancer when you think of it. People tend to think that cancer is a disease they caught but in fact it is their normal body cells going nuts and over-reacting and becoming abnormal. Again no one knows what triggers the cells to do this. If we did we could cure all cancer. Sarcoidosis is our normal immune system reacting crazy and fighting against our healthy body instead of fighting infection and no one knows what triggers it. It sometimes makes me think there must be a common denominator in both cases. If we were suffering from some disease like TB or even a simple chest infection at least we know it is an outside force invading our body and not the other way round if you get my meaning. There are so many unanswered questions like why do some people get it and others don't? Why does it strike more Asian people than Caucasian people? Although I still think more people get it than is recorded because of mis-diagnoses.

Something I discovered today was that I'm almost certain I have been suffering from Sarcoidosis since 2001. My rash is now on my back and in my scalp as well as on my feet and ankles and today I suddenly remembered having the same rash in 2004. I wqas living in China at the time but came home briefly to visit my daughter. When I got back to China my daughter phoned me and told me she had shingles and I said I was sorry I had them too but I knew Shingles is not a contagious disease and though it odd at the time and just coincidental. She was diagnosed properly but I didn't go to a doctor and then today thinking back I realised that they were similar to the Shingles rash it wasn't Shingles. I also remember having a chest infection at the time too. I had 3 severe chest infections while working in Mainland China from 2001 - 2004 and was treated for pneumonia too but of course I never had an X-Ray because of where I was working. In 2004 when I had the rash I was in Hong Kong and couldn't take time to go to the hospital so again no X-ray. All the way from 2001 - present I have had flare ups and never associated it with Sarcoidosis until now but my goodness it is becoming so clear to me now when I put the pieces together that I have had the disease for the past 12 years. My point in all this rambling is that I have been in and out of remission over all that time without treatment so my immune system has been kicking back in of it's own accord until 18 months ago when all the symptoms hit me at once and literally knocked me off my feet. It certainly is an intriguing disease! I am so hoping you have gone into permanent remission although it is remission as there is no cure. Sorry I just want to be realistic because as I said you can stay in permanent remission but there is always a possibility of it coming back even years into your future. Sadly there is nothing anyone can do to prevent it happening but there is also no point in thinking every day that any symptom you had was it coming back. The best thing to do is get on and enjoy your life and hopefully a positive attitude will be the best medicine ever!. I'm sure with your eyes etc feeling and looking so much better that this is the real deal - remission! Fingers and everything else crossed ha ha! June

Hi Helen, I was chatting to my daughter about oral thrush treatments and she told me that she discovered that when she used Corsodyl mouthwash her oral thrush cleared in 2 - 3 days. She has extremely bad oral thrush because of medication and health issues too. She said she used the medicated one and also the normal one but can't remember which one worked best. I would assume the medicated one as thrush is a fungal yeast infection but you never know, maybe the normal one is strong enough to cure the problem too!.

Also, please don't use it for longer than 2 weeks at any one time as it will kill the normal flora of your mouth if used over a prolonged time and you will end up with even more problems. This is a problem with mouthwashes that people do not realise. Where it might be killing bacteria in our mouths like the adverts say but it is also killing the good bacteria at the same time. They make the mouthwashes far too strong. Don't use any of the other mouthwashes on the market (cheaper version etc) because I only know that the Corsodyl one works and I'd hate to think that you were gargling away for nothing!. Best wishes, June

Hi Izzy, I'm really glad to hear your rash and headaches have improved. Fingers tightly crossed that maybe you too are going into remission like Linda. That would be fantastic! The loss of appetite and fatigue will quite possibly go on longer especially the fatigue. Your body has taken a good old hammering inside because your immune system has been fighting with it as though it were an infection. Unfortunately no one can see this and that is why they are not very empathetic when you say you are so tired. It is a horrible tiredness. Not like having stayed up too late or worked very hard and a good night's sleep will rectify it. It is easy to see how ME sufferers are so misunderstood isn't it? I sleep for hours too. In fact I regularly fall asleep in the middle of doing something. Because I am always sitting in my wheelchair it's even easier for me to doze off. It can be quite frightening too. I actually almost drove my wheelchair into a hedge several weeks ago because I dozed off on my way to the shops! I would strongly advise any Sarcoid sufferer who drives to be very careful and not drive when they were having a bad bout of their Sarcoidosis. So if you drive have a think about maybe not driving for the next while until the fatigue goes away. It's not just yourself you have to think about. Even though I am only in an electric wheelchair and not a disabled carriage I could still hurt someone or even cause an accident if I were to go off the pavement so even I stopped going out unaccompanied.

I really wish the doctors would go straight for a CAT scan rather than all these ordinary X-Rays. They are only as good as the radiographer reading them. Also they may think they are saving money but if the X-Ray is not clear or even if it shows something they have to order the CAT scan anyway. It delays treatment and causes the patient stress having to wait but of course it is all down to money. I heard on the news yesterday about even more cutbacks because of the billions of debt in the NHS. I can see up all ending up having to get private health care soon. It definitely looks that way anyway.

When are you going for your X-Ray Izzy? Soon I hope as they seem to have made you wait too long already. Once upon a time when you went to the doctor complaining of problems like this he would have sent you immediately to the hospital for X-Rays etc. How times have changed! You take care anyway and keep us up to date with what is happening. Best wishes, June

Hi Ailsa,

I am having my chest x-ray on tuesday and more blood tests to see what the inflammation is up to. I don't drive so i don't have the worry of falling asleep at the wheel, just falling asleep on the bus and missing my stop. I can understand that driving a wheelchair could be a little worrying.

And Linda, i suffered a bad bout of oral thrush a couple of years ago due to vitamin B12 deficiency and the Dr gave me an oral suspension liquid which cleared it up, also eating some natural yogurt can help with the burning and soreness.

Well good luck for Tuesday Izzy. I hope your fatigue eases off soon. The prescription you would have been gives for your oral thrush would have been Nystatin. It's a good medication for clearing up thrush right enough. I think the yogurt is better though because it tastes good ha ha!

Hi Izzy, my oral thrush seems to have eased up quite a bit since leaving those 3 tablets off last week.

Sadly I don't like yoghurt s.

Wishing you all a good weekend!