Sarcoidosis - not enough care and attention given to sufferers
Posted , 66 users are following.
Hi, I've only just joined this forum but as a long term sufferer of Chronic Sarcoidosis I thought maybe I could say a few things on the matter. First of all I was shocked to read that one of the forum members had been told by his specialist that night sweats are not a symptom of sacoidosis. Nonsense! night sweats and indeed profuse sweating during the day are symptoms of Sarcoidosis. The lack of support for people suffering from sarcoidosis is dreadful but the truth is that not enough is known about the disease and especially amongst UK doctors. American doctors are more on the ball but then they have the money for research etc in the US. I spend my entire time fighting and arguing with health people, trying to get appropriate treatment for my various symptoms. Luckily I have an excellent respiratory specialist but that is all he is a respiratory specialist so when it comes to all the other problems I have due to sarcoidosis such as skin, eyes and nerves I have to fight to get tests and treatment as either no one believes me or they think it is up to my respiratory specialist to deal with it. He in turn kicks it back to my GP (rightly so) and at the end of the day nothing gets done as no one will take responsibility for the symptoms! It's a ridiculous situation but it boils down to money as all these MRIs and tests are very expensive and neither party wants to foot the bill. The over powering fatigue is dreadful and I can literally fall asleep in mid conversation. Also the depression that comes from constantly feeling unwell and the frustration of fighting for proper care also takes it's toll. The sweating I spoke about earlier, can not only hit at night either as I find that expending a little energy just hoovering a carpet can cause sweat to literally drop off me. At the moment I have severe pain and severe pins and needles in both arms and hands and it has taken me 6 months to finally talk my GP into allowing me to see a neurologist. I will see her tomorrow but my respiratory specialist told me not to hold out too much hope of being believed! So you see even the doctors who understand Sarcoidosis know the taboo within the health sector so what chance do we have? I was originally on high doses of steroids but unfortunately they caused me to have a psychotic break so I had to be taken off them so I am now on an inhaler and mucosal thinner to try to combat the extremely thick, sticky sputum I coughup.In one sense I suppose I am luck as I am already in a wheelchair due to nerve damaged feet (hospital screw up!) but I had to change to an electric wheelchair because with being so breathless and having nerve problems in both arms I couldn't propel myself around in my manual one. I say I'm lucky to be in a wheelchair only because without it I wouldn't be able to get around at all because of the sarcoidosis. I sometimes wonder if UK doctors have a bad attitude towards sarcoid sufferers because they think everyone only has the acute sarcoidosis and it would probably resolve itself or even come and go undetected in it's own time. I really don't know but what I do know is that they need to become better informed about this disease and be more caring when treating their patients. It's not a deadly disease but it certainly takes its toll on the sufferer and the symptoms need correct and fast treatment before they become a real problem. Keep your chin up fellow sufferers and don't be scared to be pushy with your GP. He has a comittment to treat his patients whether he thinks its serious or not. You have a right to demand to see a specialist or to get a second opinion but do remember that not everything is linked to your sarcoidosis so if you develop a new problem make sure you get it checked out properly and don't be fobbed off with your GP saying it's just a symptom of your sarcoid because it could be a different health issue altogether.
21 likes, 1045 replies
ailsa_june
Posted
louisa21514 ailsa_june
Posted
I have just found this forum and am suprised at what everyone is saying it just sounds like me. I have been through a lot of the same things you mention in your message the thing that matches me is the spine and joints are sore with me its my back muscles which seem to pull on my eyes. I start on the steroids to get the swelling down on my optic nerve so I will see what that brings. I am on a scary path and am pleased to see others are going through the same thing and frustrations with the medical profession.
I hope that you are doing better now please let me know how you are doing if you dont mind reading your post did make me feel a lot better about my situation.
T-COY
Kaitlin7150 louisa21514
Posted
maureen07 louisa21514
Posted
I haven't been officially diagnosed but I was caught by your comment about your back muscles pulling on your eye. I have excessive facial sweating (and it was first treated as hyperhydrosis and then proved it wasn't that) and just recently before my knee replacement surgery the pre op X-rays showed some lower left lung flattened alveoli. Then last August I was hospitalized with pneumonia. I had an awful side effect from my antibiotic levaquin, both shoulders and upper arms were to painful to even lift. I went off the antibiotic but it's been a month and I still have this pain which I was just informed could go away tomorrow or never. Are they kidding me? But before all this I have had three lower back surgeries one spinal neck surgery and both knees replaced. And each time I have pain in these areas after they supposed fixed these areas and so they all comeback with the same dx of arthritis causing all my pain. I've had nerve damage after one of my back surgeries. I have had a small but controlled pituitary tumor (prolactinoma) for about 27yrs. I have at times in the last 4-5 yrs had a hacking cough that comes and goes in a day but when I have it it is extreme coughing like a 90 yr old smoker and a few times have thrown up all that gross flem that chokes me. I have found this post by looking up about the sweating. It makes me miserable and after reading a lot of these comments some of the others symptoms seem to feel like mine so I mentioned to my respitory dr about sarcoidosis and he sent me for xRays and contrast CT. And said I had flattened alveoli In the bottom of my left lung and put me on prednisone. But I have had for about a yr a weird problem with my left eye. When I wake up on some mornings my left eye seems to pull closed. It it a real strain and painful to get it to open and stay that way. It takes only a few min to finally do this. I asked my eye dr about it but they said it was nothing. So after all this, my question is. What does your eye problem feel like anything besides pulling?
linda39
Posted
I am having a mediastinoscopy, its basically they are making 3 incisions in my neck.
I am back to the eye hospital tomorrow as I am now under the Uveitis clinic.
In all honesty apart from the hnaging around in between results or lack of I have been dealt with quite quickly, but this is now all through the hospital, I have not been back to my GP since see the rheumatologist.
Oh ive just had a call i;m going in on Sunday.
Kaitlin7150 linda39
Posted
ailsa_june
Posted
I'm really sorry I meant to get back to you before you went in for your procedure. I'm thinking about you and wish you all the best. Let me know how you get on when you are feeling up to chatting. I went to my appointment on Friday and have been told that my lungs are now permanently damaged so will probably be on steroids and other meds for the rest of my life. I'm also about to start on Hydrochlorquine for the nerve damage and joint pain so fingers crossed it will help. Also had bloods taken as the specialist suspects that the Sarcoid is getting bad again but he will write to me when he get the results. I couldn't believe that after 6 weeks the Neurologist had still not been in touch with my specialist with the latest test results! It's just a joke the length of time they take to communicate with each other. I could tell my specialist was not happy but hats off to him for keeping his cool. Of course he is unable to start any real treatment without the full results but he did decide to try the hydrochloroquine in the meantime. Anyway enough about me. I'm really hoping that everything turns out good for you and that you get a proper diagnoses. I always think that people feel better when they have a full diagnoses and know what is happening. It is scarier not knowing and makes you feel worse I think. Feel better soon and take it easy. Hopefully we will chat soon. Kindest regards, June
marie82928 ailsa_june
Posted
linda39 marie82928
Posted
Hi Marie and welvcone, hope you get great comfort from this site just as we all do.
Kaitlin7150 marie82928
Posted
linda39
Posted
Thank you for your kind words.
My op got cancelled at 4.30 on Monday, but I was told that evening that it would be carried out Tuesday afternoon, which it was. It wasn't 3keyholes it was a 3" cut just above my breastbone. There is no dressing on the would just a plastic coating so it is not a pretty site. I was sent home yesterday morning, but got this horrid annoying coughing which is making it painful. Hopefully get my results on Wednesday!!! Oh so sorry to hear what you have been informed re your lungs, is this just from Sarcoidosis? That's awful re your results and communication. I must say I have been luck with being kept up to date etc.
Today it all seems to of hit me, whereby I've been quite relaxed about it all....but now it seems like the 'real thing'
Actually how did they discover you had sarcoidosis, did you have a biopsy and which type. Also how long have you had it?
Kind regard
Linda
ailsa_june
Posted
Kindest regards,
June
Kaitlin7150 ailsa_june
Posted
debraadavies
Posted
Sonjafay debraadavies
Posted
Kaitlin7150 debraadavies
Posted