Sarcoidosis - not enough care and attention given to sufferers

Linda, first open a reply window and just beside where you click to add a smilie there is a sort of mountain icon. You click on that and it opens a window on your computer where maybe your documents or files and photos are. You just need to use that window to get to where you have stored the photo you want to post. When you find the photo click on it and then click on open which you should see at the bottom of the window. Your photo will automatically upload into your post. I hope you can understand my directions. June xx

 

Hi June

Great instructions thanks

But on my phone it is not showing that icon. I only have three icons. Heart. Flag and another which is a link to Fb etc

That explains why I wasn't able to do it originally. X

Sorry Linda I meant that the icon is on this page on the internet and after you click 'reply to ailsajune' you then click on the icon beside the Smilies which looks a bit like a mountain. If you just scroll your mounse over this icon you will see the words ' upload an image '.

However, I think I misunderstood the problem you are having as you mention your phone so I think you are telling me that you don't know how to put you photo onto your computer. Is that right? I know it varies from phone to phone where your photos are stored but if your phone has a MicroSD card in it then its a good bet they are kept on it. So, once you have taken your photo, you take out the micro card and put it into a card reader (some computers have card readers on them - the newer ones but if not then you need to beg, borrow or buy one. They are really cheap - anything from £1.50 upwards. Once you have one you push you micro sd card into it and then put the card reader into one of the usb ports on your computer. You then need to find your photos (mine is always in a DCIM folder on the SD card of my phone) and copy and paste them either directly onto your desktop or into your picture folder. Then you follow the original instructions I gave you in the earlier post. If your phone doesn't have an SD card then all you have to do is use the usb connection cable you got with your phone and connect your phone directly to your computer. Search the phone via your computer for your photos and copy and paste them onto your desktop and again follow previous posts instructions. Sorry if I have left you confused. I'm great at doing things but not good at describing what to do. 

I'm hoping this will help but if I'm way off the problem you are having just let me know. I have a Samsung phone and although I am not familiar with other phones I'm sure we can work out how to do it together.

This is a bit like Saturday past when I went out with my daughter and family and I was trying to get her to take something out of my bumbag. As I was saying things like 'left under the pen, no no under the blue pen, beside the bank card). we were both getting a bit frustrated when she suddenly yelled "Oh God! the blue wire, the red wire, the blue wire. Which one do I choose, time's running out." Which had up both roaring with laughter. I guess my instructions can be too misleading at times.

Hugs June xxx

Hi June

Thankyou for your detailed instructions

I have iphone5. Which is very easy to send pictures from and the picture of my ankle is only phone. 

However I am unable to find the ink on my phone/ this site which allows me to this this

Maybe I should look for the red & blue wires haha x

Hi both,

I have just noticed this discussion and the issue is the image upload icon along with the others do not appear on the mobile version of the site. This is due to the reply boxes using various scripts for this functionality which is not supported by phones. Therefore you would need to use a desk top PC to upload an image. I will be adding an FAQ about this to the forum guide here https://patient.info/forums/discuss/browse/a-guide-to-the-forums-3313 when I get the chance.

I hope this helps.

Regards,

Alan

Many thanks for this I will do so now.

 

Thanks so much. Like an idiot I wasn't thinking and I totally forgot that a lot of people these days use a tablet or phone to get online. What a numpty ha ha! Thank you for soving the problem.

June

here goes I am cutting the ribbon...ha ha x

Finally the swollen ankle and no explosion!!!

It looks very uncomfortable, Linda so remember to elevate it as often as you can and remember to support the whole leg not just the ankle or you could cause more pain.

Boom !

and finally after kept forgetting, I managed to cut the photo down of the type of mouth ulcers I get.

Ouch! I'd be hot footing it to find out if a homeopathic remedy  can bring some relief. I know teething granules were the only thing that helped my son when he was teething but I'm sure something could be done for you. 

Feeling for you!

Hi Rachael, I have been on some expensive herbal medicines for a month now.....but this was for a general well feeling.

Good grief Linda are these special home grown mouth ulcers? That looks damned sore. I did find that using a corsodyle mouth wash made a huge difference to my sore mouth but I think the sarcoidosis that covered my palate only responded to the steroids. When you think of it you just can't win can you? If it's not the sarcoid causing the sores then it's the medication.

I have to say that is one hell of an ulcer Linda and I hope you find something to ease it. You could try a couple of teaspoons of bicarbonate of soda in warm water to swill with. It at least will neutralise the Ph of your mouth and take the sting out of it. I know, me and my bicarbonate of soda, but honestly it has so many great uses. That and salt washes!

Hugs,

June

I wonder if some bio cult might help you too. They aren't cheap but given how run down you must be it might be worth a try.

Hi Rachael, thanks for the info I will make a note.

Thankfully I havent got any at the moment.

I am on another Priobotic that the herbalist prescribed for me which is coming to the end now.

 

Yes June that was a beaut [a painful one] thats why I took the picture, i get them all over my mouth but they are not as bad as the one under my tongue and of course I cant really see the others that well.

Thanks for the advice - as always.

Glad to say it has subsided now so fingeres crossed!!!

Hello Ailsa June and everyone else too, Have had a problem accessing the website and I'm not even sure how I got to the site . Hope I can find it again. Have been reading through everyone's messages and strange to notice we are all having similar problems at the same time. Ailsa I'm really sorry that you.ve been having a tough time lately. Your neighbour could do with a days worth of sarcoidosis and it might make her a bit more empathetic, horrible person. I'm finding things a bit hard to cope with these past few months as I seem to have several things going on at the same time and it's getting me down. When I read how you are all doing I feel that I should be stronger than I appear to be right now. It's 17 years since I was diagnosed and it just seems to have a real grip on me. GP does not want to know and barely listens so I feel I have no one to turn to for help. I have the rash all the time now, it comes and goes in different places, just like you girls describe it.Sometimes itchy.  I am also getting  spontaneous small bruises in my tongue and palate. Gp is not interested in any of my symptoms. Have had yukky tonsills with tonsil stones for over a months and  he will not treat them. Can't gargle as it makes the pettichae worse. Can only eat soft food. My diet is poor and I have dairy allergies,makes the chest and sinuses worse.  I feel I need a full blood count to check platelets but he does not agree. He won't check my ACE levels to see if it is rising again as he says it was only needed to diagnose it. Does anyone have any ideas to help with anything. I still put my uniform on and go to work but I am so tired. Obviously feeling sorry for myself. Sorry everyone. Hope I can get back into the site again. Is there any private consultants who specialise in Sarcoidosis? I could use my savings to see him.Take care Best wishes to all Helen

Oh Helen please don't feel like you should have to be stronger. Everyone is different and while it seems some are coping better I am sure they would be the first to say they have some really bad days/weeks. You have been struggling through 17 years of this. My God that is a tremendous amount of time to be suffering with this disease. It might not be so bad if the sarcoid only affected one thing but it hits us with several things in one go and because there isn't enough known about it you are left wondering if it is sarcoidosis or another opportunistic disease that is also attacking you. The lack of support and someone to offload on can be bad enough. No one should have to face this disease on their own. When you think how much support is out there for cancer sufferers it seems unfair that there is virtually none bar forums like this to help and support sufferers.

My GP sent me to the Marie Curie Hospice. On the first visit they were all over me telling me about all the great therapies and groups I could be in. I went home feeling great, that finally I would have some support. The next appointment I had several weeks later, I was told there was no place for someone like me at the hospice. "Someone like me!" She was a doctor but she didn't even elaborate on what she meant and I didn't know what she meant. I was so upset. I burst into floods of tears. I felt like a leper. I have never been told why I was turned away. I can only assume there was either no room at the inn or they believe sarcoidosis to be something and nothing and certainly not worth wasting their money on. Originally I had offered to make a load of greetings cards for them to sell for funds but after the way they made me feel I thought, "why should I help them?"

So please do not feel you have to explain yourself or feel you need to be any stronger. It all catches up with us and it feels like too much to bear I know. You can lean on any and all of the members here at any time.

I think you should try a change of GP or at least tell him you want to see a different consultant at a different hospital because things have certainly moved on since you were first diagnosed. Probably best to ask to see a respiratory specialist who knows about sarcoidosis.

Yes I too have found that dairy products make chest etc worse. This is because dairy products make the mucous production thicker. You also need to avoid chocolate. It's a good idea if you keep a food diary and note if anything get worse so you can pin down what it is that makes you worse.

Okay as for your useless GP and what he thinks or doesn't think is needed, you have a right to request these things and he doesn't have the right to refuse you. It's probably down to money as these days GPs are so penny pinching it's a wonder anyone recovers. That's bull about your ACE levels. They have to be checked on a regular basis as do your other blood results. Ask him who will be to blame if he refuses to check your bloods and your calcium levels are so high they cause a heart attack! Not trying to scare you but all blood results are very important. For the love of God get yourself a new GP before something awful happens.

You shouldn't have to use your saving you just need to start reading the riot act to your GP. Has he not even referred you to a consultant? Again you can demand this and he can't refuse. If he does threaten him with a letter to British Medical Association. A lot of patients don't know their rights as regards their treatment (or lack of) by their GP.

Are you on any medication or has he withheld that too? He should be treating every symptom as a seperate entity because it can just as easily be a different problem and even if it is related to the sarcoid it still need treating seperatly. For example very painful joins can be treated using hydroxychoroquine, eye drops for dry, itchy, sore eyes, lotions for itchy skin, antibiotics for any infection such as chest infections, tonsillitis, not to say steroids for the sarcoidosis and an antifungal such as nystatin for any mouth sores caused by thrush or whatever treatment is required.

Please don't use your hard earned money. You are already paying for medical treatment every time you pay your National Insurance stamp so why should you pay more? So, you need to pull up your big girl pants and march into you GPs office and lay down the law. Don't take no for an answer. You have the law on your side. Just remember not to shout (or swear) but be firm and precise. Write down on a piece of paper what you want to say and what you want to happen and don't be put off by him. He's a GP not a God so you've no need to be frightened. Failing that go and pick up a new patient form from another GP, it will take about 2 weeks for the swap over of GPs. Your new doctor has to carry out a new patient check up so you will be able to tell your new doctor about everything that is wrong and that you want to see a consultant.

I hope this has helped you, Helen. Just stay strong. 

Thank you for your kind words regarding my trouble with my neighbour. To be honest I am more upset with the housing officers and their appauling treatment of me. They were round again a couple of days ago and advised me to go feed the birds and strays in the park. The park where a woman was brutally raped and murdered months earlier!!!!!! I was so shocked. Now I can't wait to get out of this flat if that is the way I am going to be treated.  

I hope I have helped you in some way Helen. I am only sorry you have had to suffer for so long. If any of your symptoms have cause irreparable damage you may also have grounds to sue your GP for not treating you or keeping a check on your Sarcoidosis by taking bloods etc.

Keep your chin up.

Hugs,

June

Your GP should be shot! How very unprofessional of him to treat you with such contempt. I would lodge a complaint and change doctors. All of my doctors at my surgery are sympathetic to our cause you need to find a better more sympathetic and compassionate surgery. It makes me so cross to hear how some people are treated by so called professionals. You certainly shouldn't be having to spend your own money to find a solution to your health issues when the NHS is there for exactly that purpose. 

Found an article yesterday about mouth ulcers which said SLS free toothpaste can help. Homeopathic remedy  was suggested Arsen alb.

Tea tree oil was also  recommended along with myrrh  made into a mouthwash of warm water or used as a gargle. You poor soul I really feel for you. Conventional remedy was listed as bonjela or iglu gel.

hope you get some relief soon

I agree, don't put up with poor treatment - complain! But avoid making it personal. Write a letter listing your symptoms and how long you have suffered from them, and emphasise that you are being caused anxiety and emotional distress as well as physical discomfort by the lack of treatment. Address it to the head of the local Practise, with a copy to the next level of the NHS and the Royal College of General Practioners.

Well said Di!