Sarcoidosis - not enough care and attention given to sufferers

hi I'm in America and I can tell you that the US doctors don't know any more than your doctorI was diagnosed with sarcoidosis after a major surgery in 2009 my family was originally told I cancer I have sarcoid every Oregon I lost part of my Pancras and spleen sarcoidosis attacked my liver more than anything else along with my hip and legs I am up now I am in severe painI have seen many specialists including a neurologist before I was diagnosed I lost all feeling in my legs I could not walk my speech was slurred the right side of my face drupped  they sent me home and treated me like I was a mental patients the fatigue can be unbearable but prayer is the only thing that has got me through this far I will be seeing another specialist next month at Emory university hospital in Atlanta. I will keep you all posted

hi I'm in America and I can tell you that the US doctors don't know any more than your doctorI was diagnosed with sarcoidosis after a major surgery in 2009 my family was originally told I cancer I have sarcoid every Oregon I lost part of my Pancras and spleen sarcoidosis attacked my liver more than anything else along with my hip and legs I am up now I am in severe painI have seen many specialists including a neurologist before I was diagnosed I lost all feeling in my legs I could not walk my speech was slurred the right side of my face drupped  they sent me home and treated me like I was a mental patients the fatigue can be unbearable but prayer is the only thing that has got me through this far I will be seeing another specialist next month at Emory university hospital in Atlanta. I will keep you all posted

Hello, my nam is Ryan and i was diagnosed with sarcoid about 5 years ago I'm now in remission. I now wear glasses and need an inhaler all the time but I probably need that most for my asthma. But I was wondering have you ever experienced an OBE I just recently found myself waking up and my ear gave thus high pitched noise in it. Also I felt paralyzed, couldn't move couldn't scream,but tried very hard to do so. It also felt like I had a slght dream before I woke up. If you can get back to me ASAP. I would appreciate.

. Thank you

Hello Ailsa June, I have not been able to access the site since it changed some time ago.

It's not so easy to find this forum as there are so many now.

I hope that you are doing ok and that christmas was a happy time for you. There are always new paople being diagnosed and it brings back memories of when I was first diagnosed. It's 17 years for me now and I have so many problems I don't know how I survive from day to day at the moment. It's a constant battle is'nt it. I read of the suffering of everyone here and my heart goes out to them and I hope that they get a remission or recovery from this awful illness. I have friends and family who were diagnosed with various cancers and the care, attention and treatments they have been given is second to none. Sarcoid is not viewed in a pro-active way and I have personally been treated like a neurotic by my Gp's. I have been unwell for a few months with several things all at once and my Dr is still making comments which belittle me. I hate going now and try to treat my symptoms myself. It's handy being a nurse but frustrating when they are offhand with me and make me feel a nuisance. I am too scared to ask for a referral to ENT and urology, so fortunately I am in a position to contact a Gynae consultant who will help with some of the recurring gynae and UTI problems which is awful just now and has been going on for months now. I plan to do this right after the new year, I used to work with her and I know she will listen to my symptoms and take note of the clinical findings. I'm praying for all you sufferers get the help you need. Ailsa June, once again you are a bright light in a very dark place. I and I am sure others too are grateful for your advice and positive attitiude which you continue to display despite your own problems, Thank you, hope 2015 is better for all of us, best wishes Helen

Hi all - if you are all still hear - I lost this page 

anyhow hope you all still ok it has been a long time since I posted - but need your help once again 

I have to come off the steroids this week after a year - god it's been a year 😳

my consultant is asking if I would like to try an immunesupresant drug 

what medication do you all take and does it help 

love sharon 

 

Hi Ailsa,

I'm new to this forum, i dont know how often you visit the site. would love to discuss my symtoms.

sal xx

Hi June, Your post is encouraging & postive- thankyou! I'm really sorry to hear what you've been through & sincerely hope you're feeling better. I was very interested that you said your symptoms may have started following several chest infections. I guess you've read all the stuff that reckons carcoidosis may be linked to intra-cellular bacteria? And promotes 'anti-inflammation therapy' that includes antibiotics? I just wondered what you thought about it, and whether anyone else in the UK (or US) has gone down that treatment route with any success? I have not been diagnosed but my chest symptoms are making me fear I may have sarcoidosis. I also have an existing diagnosis of intra-cellular bacteria & previously had sytsemic lichen planus. A seeming succession over 7 years of rare conditions linked to the immune system is making me wonder about doing an infammation therapy protocol. If anyone with experience reads this I'd be really grateful for your thoughts. I did manage to cure myself completly of systemic LP, though I was told I would always have it, so I am never willing to accept a diagnosis of 'incurable' lying down! Best wishes to everyone, Anna

Hiya ailsa June

Sorry to hear about the runaround you are having. My gp always refers me for anything and everything that is going. I see that you have mobility problems. Have you had an assessment yet from an OT. I had difficulty getting upstairs and getting out of the bath. Within a week of the OT visit a bathlift and stair rails had been fitted. So go for it. In Northampton you can refer yourself, try social services. Good luck Alison

Thank u for your honesty. My husband is disabled and retired from the US Army, however he was born in Rochdale, England and his family still reside there. He has acute sarcoidosis and believe it or not Ailsa the USA Drs are on about the same level as UK Drs. Trust me please he and I speak of the differences in healthcare there and here all the time. Though I am referring to veterans hospital Drs. It's time we petition and make a stand. Drs today aren't like they used to be. I had unique injury, a fractures with bone frags, spurs, bursitis, and arthritis connected to my completely orb rotator cuff . To go along as well, I've osteoporosis arthritis. Since I'm 33 years young, Drs today take one look at me and . turn their heads. Enough about me, would not do any good if I had a pity party would it?

My husband Scott suffers daily in muggy,humid,hot, & sticky Kentucky weather. We live n the 2nd place highest rated for extreme allergies and pollutants n the Ohio valley here in the US. He not only suffers from sarcoidosis, but also from a variety of symptoms that correlate with this ugly disease, such as fatigue, sleep apnea, night sweats, PTSD, OCD, ADHD, high blood pressure, hypertension, panic disorders, anxiety. Endured surgeries to correct his thyroid, both knees, ankle, broken Ribs, & wrist, Now has nerve damage and scar tissue.

It is a daily struggle for him to fight for air. The way the US works is capitalism at its best! Yet, let's forget about politics and get back to focusing on the main issue. The VA hospital takes great care of soldiers oh believe me they get proper care in the extreme areas, however the Orthopedic and family Drs.( which I'm not bashing all) some prefer that they've prior engagements while eagerly falsify their own mindsets on legalities. Some Drs r so busy scheduling every apt for itemized issues as u were saying, that by the time you're due for your disability check u fought tooth and nail for, you're utterly exhausted and back to square one feeling disabled again. Lest not mention down on good energy that should've been spared for your air tank or immune system since having had run around to each appointment made months prior. As well as the sarcoidosis symptoms to top it off. it's hard enough not to miss the Dr. Apt. I understand what your going through all too well Ailsa and believe me love, you're not alone , prayers and support and he best of every happiness. Salud to you and yours!

it is amazing what proper food and sleep can help, sarcoidosis affects not jus the lungs folks it affect every organ liver, kidneys,eyes,Skin, etc. it is time to treat it as a serious disease that needs to be magnified, attended to properly , all the while being thorough given an efficient. Examination, prognosis, diagnosis, and treatment. Thank you kindly for speaking up on this diligent matter.

Respectfully,

Kaitlin Connolly

Hi,

I'm new to forums and desperate for some advice. My mother was diagnosed 4 years ago after several years of misdiagnosis....

She is now in remission although she still suffers from shortness of breath and fatigue she seems much better. She was talking to me last night about her fear of it all coming back. The fevers and not being able to breathe etc. I was talking to her about my dental issues and how my dentist wants me to see a specialist because of the inflamed periodontal ligaments surrounding 3 of my back teeth that was not there last visit.

I woke up this morning in a panic. It was like a light went off. Do I have it too??

The more I research sarcoidosis and teeth the more I feel I may. I've also been having other symptoms.

My question is who do I see? A physician who specializes in which field??

Thank you

Hi Ailsa June, Just wondering how you are, cannot find you in any recent messages. Hoping you are doing ok and all you other folks here, keep positiveespecially in the bad times Helen xx