Sarcoidosis - not enough care and attention given to sufferers

Awe you poor thing. Root canal is horrible I know. I don't think anyone likes it or is happy with the outcome. Whe the tooth dies after the root canal you end up with a discoloured tooth and then you need to fork out for a crown or cap God I never know which is which!

Remember to tell him to use extra strong cement the next time he gives you a crown!!!

Has he put you on antibiotics for the infection? He really should and especially as your immune system is compromised.

I am just sitting fed up to the back teeth with everything. I can't believe that a mistake not made by me can be squarely placed on my shoulders. I only got a letter after I told him I wasn't going to deal with it until I had it in black and white in front of me.

I have never been sent any statements except one in October 2013 after I had complained about not receiving any and that statement only covered from July 2013 - October 2013 so how was I to know there was a problem? I was told I must have received others and if I hadn't then it was up to me to contact the post office because they had definitely been sent to me. It's all a cover up I think. It's making me ill thinking about it. I don't have any money or savings so they will have to whistle if they refuse to agree that they have wrongly charged me for services I don't get. Great start to 2014!!!!!!! Just another year of crap!

I hope you get on okay at the dentist. Try and think of something nice when he is drilling for gold

Hugs,

June

June, don't let the housing association get to you. No matter what they may say it sounds like the mistakes are all at their end.

And if they are charging you for services you don't, surely that should be easy enough to prove and demand the money back or tell them to put it towards the money they say you owe.

Funny how these types of panic inducing letters always come on a Friday or Saturday so you have plenty time to worry about it and nothing you can do.

Thinking of you

Current therapy in sarcoidosis, the role of existing drugs and future medicine

Vorselaars, Adriane D.M. , Van Moorsel, Coline H.M. , Deneer, Vera H.M. , Grutters, Jan C.

Inflammation and Allergy - Drug Targets 2013-01-01: 12 (6): 369-377

Hi Guys

If you're interested this paper is a good guide to the main treatments they use for sarcoidosis. You should be able to download/read it on the internet if you do a search on the journal title. I've seen the abstract through my work and need access to the full paper for the task I need to perform so if I see anything exciting when I get round to reading it I'll let you know

Morag

Hi Morag

You are spot on re getting 'certain' letters at the weekend. I have often thought that

Thank you for the research info

Thanks Morag, I did get myself in a state. That's something I seem to do easily these days. I ended up coughing up blood stained sputum and then had a couple of nose bleeds. Honestly I don't know why I let this man get to me. I think it was because he reminded me of a collection agent because of his dreadful threatening attitude. I did manage to calm down and discovered that over the year and a half that I have been here they have charged me £296.19 in services I don't get. The last time I pointed this out the previous housing officer reimbursed my account but only for 2013-2014 so the 2012 - 2013 services were not reimbursed. I've written them a letter so hopefully this will soon be sorted out. If only I hadn't been so ill when I first moved in I would have seen all these service charges and done something about it.

Thanks so much for the links to the research papers. I'll lose myself in those and forget the other problem.

It's another day tomorrow. Hope you are all feeling well or at least not feeling worse. Thinking of you all

Hugs,

June

Hi All,

I'm new to this forum but came across it when I was searching for info on sarcoidosis after my respiratory

specialist possibly diagnosed me with the condition yesterday.

Like many of you I've had quite a journey to finally get to a diagnosis. I've been suffering from many strange symptoms for what feels like years & years. I can't actually remember when I began with the joint pain,

numbness &fatigue as it now just feels normal to me. Over the past 4 years the fatigue & aches have got

worse & my GP has finally started to investigate. I saw a neurologist who ordered a MRI & CT scans on my neck as they thought the joint pain which is mainly in my upper body was due to a neck injury, then had an

EMG which showed muscles weakness in my arms/hands & ended up having unnecessary bilateral carpel tunnel operations which resulted in me having two permanent numb fingers & the symptoms returning.

I questioned the hand specialist diagnosis as all my symptoms didn't fit with carpel tunnel but was assured it was the case and the other joint pain was just referred pain. How wrong was he!

I've had my gallbladder removed as they were sure I had an infection & the consultant was convinced he

would find gallstones. Result is no gallstones & the pain returned not long after the surgery.

I was referred to a physio to see if he could help with my muscle weakness & between us we came up withthe possible diagnosis of thoracic outlet syndrome & advised I saw my GP & request another referral to a

neurologist for a scan to check. I had just found out that I was pregnant so was advised to see GP after my

pregnancy as they wouldn't do the scan until then.

During & after my pregnancy my symptoms got much worse especially the fatigue & joint pain. My GP sent me for a chest X-ray to check if I had an extra cervical rib. The X-ray should some plural thickening which my GP thought was lung cancer so sent me off for an urgent CT scan of my lungs which has showed lung

nodules & he referred me for an urgent appt with respiratory specialist. So glad I had that X-ray as otherwise we may have never find the nodules.

Since my referral I've had a bronchoscopy, biopsy of the nodules ( they attempted to take a lung biopsy butthe pain in my chest was too much) specimen of the mucus, loads of blood tests & lung function tests.

I saw a resp SPR on the consultants clinic in dec who keeps questioning if the fatigue is just tiredness as I have a young baby which makes me soo angry as I know the difference between tiredness & fatigue. I can't think I'm so tired. Even having to think about the slightest thing is such an effort. Also my son is now a year old. Though a busy little chap he is a great sleeper & sleeps up to 12-14 hrs a night yet I'm just as tired now compared to when I was doing nighty feeds. This SPR also informed me that all the results showed that I had a bad chest infection & needed antibiotics & all the other results showed there was a problem but it wasn't

clear what it was so said my case would be put in front of a multi discipline meeting for them to decide what

the next step is & the consultant would call me to discuss the outcome to save me a visit to the clinic

My consultant called yesterday & apologised saying that is should have been a face to face appointment to discuss options & to repeat lung functions & chest X-ray. My case had not been discussed at the muti

discipline meeting as the radiologist wasn't present &the first time he'd been able to look at my case was

yesterday again which he apologised for so now I have to wait another 6/52 until I see him as the clinic is

so busy. If only the SPR had discussed my case with him sooner.

I've such a strange list of symptoms that do worry when I finally see the consultant he may think I'm a

hypochondriac. My current symptoms are as followed- obviously the lung nodules, breathlessness, nodules

on scalp, dry &sore eyes, low in vit D, severe fatigue, brain fog, joint pain in all my limbs, loss of strength &

stiffness in all of limbs, pins & needles in arms & hands, swollen & painful lymph nodes esp in my chest pains, numbness in breast tissue, pains on both sides of my stomach, constant thirst, dry mouth & obviously

feeling very fed up with it all.

I am sure it is sarcoidosis but worry that there may not be light at the end of the tunnel after everything I'vebeen through & 3 unnecessary operations.

I'm very sorry to go on & on I just found this forum and after reading quite a few of the post decided to add a

comment & it's all came flooding out. Though I do have support like many of you have said when you are

having to suffer all these awful symptoms you are aware that to other people you look like you are fine & they have no idea how you are feeling & what effect it has on your life.

Wishing you all good health

Cassy xx

Excuse the layout of my post haven't a clue why it's like that

Hi Cassy and welcome

Glad you found this forum as it is very helpful and can be a comfort

You sound as though you have been through the mill and done of it so unnecessary which is totally wrong

Hopefully now they are on the right track as it seems to of taken a while

Funny you should mention a dry mouth as that is my latest symptom

I have at present got a horrid chesty cough which is taking it out of me

I am sure you will get lots of good advice and answers on tho forum

Kind regards.Linda

Hi Cassy.

A huge welcome to the forum. I hope you find the support here of value to you. All the members have many symptoms like you so at least you can be guaranteed to have lots of shoulders to cry on not to say offers of suggestions on how to manage some of the symptoms. Never feel the need to apologise because you think you are going on and on. You're not. This forum is just the place to vent your emotions or complain about the multi-symptoms you are experiencing. We've all been there and know what it's like so moan on girl! Lots of listeners and big shoulders!!!!!

As you can tell by the title of this forum feelings run high regarding the lack of understanding from the medical world where diagnosing and treating Sarcoidosis is concerned. Sadly it is not just in this country where the short falls occur either as I found many sufferers world wide seem to have the same problems with their doctors. In fairness to the doctors it isn't so much that the disease is difficult to diagnose so much as them even thinking that a patient could be suffering from it because it mimics so many other possible illnesses. Also because it is a rare disease a lot of GPs have never even come across it before. However, I do wish that once they have been told by whoever finally gets the diagnoses right, that they would read up on the disease from symptoms to treatments. Too many GPs kick it back to a consultant and do nothing to help their patient get through the ever cycling symptoms. My GPs favourite phrase when I'd tell him a particular symptom was causing me problems was to tell me to wait until I saw my specialist!!! This meant that I'd have to weather it out for 6 - 8 weeks between appointments! Ridiculous! Now my specialist tells me to alter my meds accordingly rather than wait for the appointment!

It's dreadful that you had to undergo unnecessary surgery. That is unforgivable as tests and scans should have shown that there was no need to remove your gall bladder. You really have had a raw deal. I turned down the offer of carpal tunnel operation to both hands/wrists as I have already had other operations go wrong in the past but I'm glad I refused this op as recently my respiratory specialist told me it probably wouldn't have worked anyway.

My wrist braces help with the pain but this wet weather causes them to be terribly painful. If anyone else is suffering from wrist and hand pain I would advise that you get some wrist braces but get the ones that also have the thumb splint on them as it makes a huge difference in pain management. I found with the normal wrist splint it didn't make much impact on controlling the pain. Also if you can afford to buy your own I would suggest that you buy the Neoprene wrist brace with thumb splints as they are a good comfortable fit. They cost around £20 and are available from a few suppliers. You just need to measure around hand and wrist to find out the size you need. You can get a free pair by getting your GP to refer you to Orthotics department in the hospital but I have found the NHS ones to be very uncomfortable to wear and I don't get the pain relief I get from the Neoprene ones. Also I found that the Neoprene was easier to wash and dry but you do need to keep an eye on the stitching as constant washing eventually causes the stitching to give way.

I think one of the hardest things to cope with in this disease, is other people. As you rightly say Cassy, people seem to think there is nothing wrong with you because they can't see it. They think you moan too much but they have no idea of the excruciating pain a Sarcoidosis sufferer is in or how hard it is to catch one's breath. Only last week I was just sitting watching TV and suddenly I couldn't get a breath. It was horrible and frightening but people just don't get it. Even doctors when you try to explain to them what has been happening have that 'look' on their face and I half expect them to say "Awe come on. It can't be that bad!"

So Cassy, you're not alone love. You keep coming back here and we will all try and help you get through the rough times but you mustn't feel guilty about complaining.

hugs for support,

June

To everyone I'm hoping you are managing through the very unsettled weather right now. I know you will all be suffering a lot from joint pains right now with the wet and cold weather. Remember to keep yourselves warm. Hats on heads and gloves on hands (but don't overheat as that causes pain too). Try and rest as much as you can. There is a lot to be said in the following;

Don't stand when you can sit and don't sit when you can lie down. Remember to put your feet up when you are sitting at least. I know appetites are not what they should be but try and ensure you are eating a healthy diet and drink plenty water if you can to help flush the system. Get enough hours sleep - at least 8 hours (the hours before midnight are the most beneficial). It won't stop the fatigue but it will help the body in other ways. A nice warm relaxing bath before bed is good too if you can manage it. It certainly will help with the joint pain and might just ease you off to sleep quicker.

If you are getting swollen feet and ankles make sure your shoes/boots are not getting too tight and if you wear socks in might be an idea to invest in some loose top socks as tight socks and shoes/boots can impair your circulation which is one more problem you don't need.

I'm off to the dermatologist on the 18th for skin scraping (Yuk!) as my rash has not improved at all. Such fun lives we all live!

As you can tell I was not evicted (not yet anyway) It turned out that the 'new boy' didn't know what he was doing other than trying too hard to impress his bosses I think. Anyway I'm still waiting for an apology but I imagine Hell will freeze over first! As I had suspected his maths was not all it should have been and he didn't get that although the rent is monthly, housing benefit is paid 4 weekly therefore there is always a short-fall of rent owing but it all sorts itself out by the end of the financial year. The harassment did nothing for my Sarcoidosis as you can imagine. Like you Linda a horrible cough (nasty thick dark green sputum) Sorry guys! way too much information. I also look like I've been beaten up as I'm covered with bruises especially on my abdomen. Don't see my consultant until March 18th so if it gets worse I might phone him early. Maybe it's just my Jabba belly getting in the way ha ha!

I really hope you are all keeping okay and no one is spiralling out of control at the moment. Keep your chin up everyone.

Love and hugs to all

June

Morning all

I have a cold - boo hoo. I know its a minor illness but it sure lays you low at the time. Saw my GP on Monday for more blood tests to go to the respiratory consultant. GP has warned me that people with sarcoidosis are more prone to having colds developing into chest infections - thought I'd better share that with you all.

Cassy, welcome to the forum. At least I didn't get any unnecessary surgery before getting a diagnosis but I think I did the grand tour of the hospital departments. So many of the symptoms of sarcoidosis are vague especially if you don't suffer too badly from them. So you really need something that makes a link to sarcoidosis I think, in my case it was the CT scan and X ray showing up nodules.

Just make sure you have a nice simple explanation of sarcoidosis in your head to trot out to medical types when necessary if they give you that diagnosis. I'm finding that because its a rare condition I'm having to explain what it is to some nurses - including our practice nurse. To be fair she had a vague idea but she's only ever seen 1 case in her nursing career which must be around 30 years now.

Stay well all of you

Morag

Hi June,

so glad that your housing issue has been sorted must be such a releif for you, although you knew deep

down you didnt have anything to worry about, that idiot that caused all this problem and stress should be

reprimanded.

I had a trying week last week, I had funerals on Wednesday & Thursday then on Friday morning I had to

get to my friend in a hurry and she was admitted into hospital and I got home 12 hours later.

So of course I was totally drained and now this cough.

My daughter is mov9ing on Friday so I want to be on hand for that too

Hi Morag,

I thought mine was just a cough but it seems to be having a few cold like symptons too now.

I am going for a chest xray and blood tests next week before seeing the consultanat on 27th.

Lets hope all this is just down to being January/ feb and we are all feeling better soon.

Hi Linda, June & Morag,

Thanks you for your messages it's great to be able to take about all these issues with people that are going through the same as me.

Linda interesting what you were saying about dry mouth. I know a Hugh number of medication can cause the condition and a lot of the sarcoid symptoms are similar to Sjogren's syndrome. I wonder if there is a link?

With dry mouth sugar free gum, regular sips of water, artificial saliva ( sounds awful) , avoiding spicy food & alcohol can help

I think the consultant wants to discuss possible medication options in 6/52 & I'm assuming steroids will be the first thing to try. I've heard how great steroids are but also how awful the side effects are which does worry me but guess worth a try.

Do any of you know if the respiratory specialist will just treat all the areas that are affected or do they tend refer to other specialist? Or is it back to my GP?

Anyone else suffered from the numbness in breast tissue? GP thinks it has nothing to do with the condition but doesn't know why it's happened but don't seems to think its needs investigating The numbness is deep in the tissue & not on the surface. I've had it for about 3 years

Another query I think my pregnancy exacerbated the condition has anyone else had this problem as at the moment I'm struggling with energy levels to keep up with my son & worry if I became pregnant again I might be even worse. My plan was always to have 2-3 children. I never thought the decision would have to depend on this awful condition

Hi Cassy

Think the answer to your question about who treats sarcoidosis depends a lot on where you stay and what the health board policy is round there.

In my case I'm seeing the renal specialists as well as the respiratory specialist because one of the main areas affected was kidney function. But its actually the respiratory specialist who's making all the decisions about sarcoidosis treatment even though I don't have much of a problem with lung function. Renal guys are just monitoring and plotting their own graphs from the blood test results as far as I can tell.

I've been on steroids since August; having started at 20 mg/day I'm gradually being reduced to 5 mg/day at the moment. Maybe I've been lucky, I haven't suffered a lot of the side effects they talk about with steroids. My main problem has been bruising more easily. I bruise easily at the best of times, have done ever since I was a kid so at times I've been spectacularly black and blue. But unlike most folk who complain that steroids make you eat and eat and put on weight, I've actually lost about 3/4 of a stone while on them.

Yeah ok folks I'm just plain weird :-)