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 cough up.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
An unusually large degenerated cell with pale-staining vacuolated or reticulated cytoplasm, as in viral hepatitis or in degenerated epidermal cell's in herpes zoster, a large form of nevus cell with abundant nonstaining cytoplasm, formed by vacular degeneration of melanosomes.
So, not knowing which kind of balloon cell I have I'm still none the wiser thanks to the lack of information from the doctor I saw.
ailsa_june
Posted
Emis_Moderator ailsa_june
Posted
I have deleted the "sub-discussion" above as it was taking this discussion off topic and included personal remarks between users. I would have acted sooner but I have been away. I will message individual users and hope you can all draw a line under this and carry on posting in a polite and helpful manner. If any users do have issues please message me rather than getting into arguments in the forums.
See http://patient.uservoice.com/knowledgebase/articles/398321-inappropriate-or-offensive-posts for guidance.
Regards,
Alan
CassyS Emis_Moderator
Posted
Please can you message me as I have some issues I wish to discuss. I've tried to PM but have been unable to figure out how.
Thanks
Cassy
rachael88657 Emis_Moderator
Posted
Emis_Moderator CassyS
Posted
I have sent you a PM. Instructions on how to do it are here http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Regards,
Alan
Emis_Moderator rachael88657
Posted
It was deleted as it got caught up in the off topic discussion. I have copied the text below without the comments related to the discussion above.
Just one bit of good news to share with you is that we got a diagnosis for my father yesterday.3 years after aortic valve replacement he has been told he has pump head syndrome, we have been through hell and back with the dreadful depression that ensued and no anti depressant worked. In desparation I got some Bush Flower remedies and the consultant said yesterday carry on because clearly they work for you. It's almost like having my old Dad back again!
CassyS ailsa_june
Posted
hope everyone is doing ok.
Is everyone suffering like me now it has turned colder? my joints are soo painful. It's rubbish. Has anyone found anything that helps? I'm finding heat the best thing at the moment
Due to see Rheumatologist tmrw after resp consultant reffered me as thinks I'm also suffering from fibromyalgia. So hope it not billions of tests as not sure I can deal with that. Hoping for some good news so keeping fingers & toes crossed.
Cassy xx
MM77 CassyS
Posted
Me too... no swelling but small joints are really sore, different ones on different days. My lymph nodes are really sore too, under arms and behind the knees mostly.. Also feel sick and fatique but finding it hard to get good night sleep. For joint pain I find that gentle short walks are benefitial ( for example 3x15 minutes each day) and then stretching. Loads of.. especially before bed time for 30 minutes. Gently tho, not a big workout style. I just lay on the floor front of the telly every night. Thankfully meds have kept the swelling away so far
Good luck and take care of yourself, hope you are feeling better soon
Love
MM
frustrated61 CassyS
Posted
Frustrated
morag7 CassyS
Posted
I'm not doing too bad right now but then its been a good deal warmer and also dryer in the West of Scotland than in a lot of the rest of the UK over the last month or so. But I know there are several of my friends with joint issues normally find that their problems are worse when its cold! And the answer from them is "try not to get cold in the first place".
One of my pals has fibromyalgia; from what she's said a lot of the tests, particularly blood tests, that they do for sarcoid are the same ones they do for that. So hopefully not too many tests! And if they do diagnose you with the condition, the answer is basically much the same as for sarcoid, do what works best for you whether that be herbal medicines, regular medicines or whatever. And don't be afraid to go back to them if they give you something that doesn't work for you. My pal is now on her 3rd or 4th different pain control option - she just went for the route that if its not having an effect after a month go back and ask for something different!
Hope it gets sorted out soon
Morag
CassyS frustrated61
Posted
I've written this mess about 5 times now as the page keeps freezing & losing all I've written Grr!!
My rheumatologist thinks I might have a number of problems, typical! & has ordered a few tests to investigate further. Poss fibromyalgia & tendinitis & he wants to check if sarcoids is affecting my nerves, fingers & toes crossed it isn't & rule out some other things. So had my hands xrayed & loads of blood. Seeing physio for help with hyper-mobile joints, another nerve conduction test-Ow! & ultra sound of my shoulder & possibility a steroid injection. Not thrilled about having all these tests again but appreciate it has to happen to get help. Just remember how hard it was when trying to diagnosed the sarcoids . Guess just gotta get on with it.
I'm just recovering from a sickness bug. First time I've had anything like this since my diagnosis & wow has it knocked me out. I used to think my painkillers never helped me but after 24 hours without any in my system I realise how much they are helping.
Hope everyone is having a good day & not in too much discomfort
C xx
kristy1980 ailsa_june
Posted
kristy1980
Posted
MM77 kristy1980
Posted
Welcome to the forum, hopefully you find some answers here or just a general support from people who have similar sufferings to you. Sometimes it is just great to have a good rant..
Sorry to hear about your troubles.. Sounds like you are having a bad flare-up of Sarcoidosis.. Hopefully you are feeling better soon.. Maybe they took you off the meds a bit too early.. Mine is more joint pain (RA like) and lymphnodes, had really bad lungs to start with too (Stage 2) and lung capacity was really bad but this (fingers crossed) has now calmed down for a year or so now.. I have had obvious sarcoid now for about 25-26 months..
Hope you are feeling much better soon,
Love MM