Sarcoidosis - not enough care and attention given to sufferers

I had my first bout of Chronic Sarcoidoisis in 2005-2008. My doctors had never really ever come across it. Was suspected hodgkins for several months, i spent first year in an out of a hospital, i was nill by month for couple of weeks, bleeding from different places at the same time cus of the pills, told a one one there was nothing wrong, just soft tissue they couldnt do anything about. was on just fluid for a month or so. I have had several flair ups of the disease since it went into remission, but am now in the chronic stage again and i can feel my body getting worse each day, things all over the place swellow up and going down lymoh glands and temperature cant make up its mind. And its been 3 months since i told my doctors i had it, and i have my first clinical investigation 21st March 2017 and specialist appointment on the 5th April.

If they had listened to me at first i wouldnt be in the state i a now. I dont what to get where i was in 2006 where i spent a whole year in so much pain i wanted to die each day. I Do agree with Ailsa June that that seem to be this slow process of people in the UK medical preffession wanting to be the first one to say, yes, it is and , right , X-ray, and clinical investigatin for you... I have to admit though that its still in the air whether it is Sarcoids or Lung Cancer, Sufferes know that until they get that milky white lung x-ray and then a lung biopsy, its hanging over our heads. I have even been trying Turmeric capsules - 800 mg a day to see if that helps me a bit. Seems to at times. But im not doctor. My doctors gave me a week of high dose steroids, then 2 weeks with nothing and then 3 weeks, with the tapering off, if they'd have just kept me on them perhaps i wouldnt be getting worse whilst i wait until next month...

omg thank you so very much for making me feel im human and not loosing my mind!!!  im sooooo fed up of trying to be heard by my specialist or doctor i totally give up   nobody listens im so  fed up its like we are fighting a loosing battle i just wish all the people we try and explain are symptoms to could get this sarcoidosis and then they would know what we all are suffering from i wish you all the best take care xx

Well im in the end of the 5th month since flaire up started this time, and was so not happy, cus of a new NHS procedure, saying that all inpatients have to be seen by their specialist each day, it has thrown all out patients appointment out and it has been stated that this means that some of the more serious cases may slip through the net. Least next week can chase up next set of xrays.. Had five different specialist dates so im just hoping they dont change it again. But least the it seems stationary for now behind the breastbone, and in the left and right breasts lymph nodes/ But getting slower and the sun makes me feel so much more ill no. Pulse still shoots hi and becuase of that and how the steriods pushes up my sugar from the Prednisolone induced diabetes type two that developed when first had it chronic in 2006 am having minor panic attacks now. Not sure if any others are suffereing these attacks

Dear Alisa June,

Thank you for detailing everything to do with your Sarcodosis, as this is the first time I have read about another human being going through exactly what this illness has put me through. I was first diagnosed in 2001, after i collapsed at home & woke up in A&E. I was very lucky that a Scandanavian doctor was on duty when l was admitted to A&E at Chase Farm Hospital, & he diagnosed the illness immediately. I had ignored all the symptoms because l was a single parent juggling university study with raising three kids. I had a growth on my lungs, causing me difficulty breathing. Every joint & bone ached. Every movement I made left me dizzy with head-ache, and shooting pain in my joints. I developed bruises all over my skin, my Vitamin D was 8, & so I began my 4years weekly out-patient care under the care of four consultants: Lungs Specialist, Haematology, Rhuematology, & Dermatology. I declined to be admitted as had 3 kids aged 3 - 10, & didn't want them going into care. I agreed to be a 'guinea-pig' for the consultants to tutor medical students as the illness was so rare, they hadn't treated a patient with it for years in that hospital. I was on crutches for three of those four years, and absolutely dreaded the 16tablets I had to take every 4hrs. I had my bones thinned, had a biopsy, and a very caring GP who would sometimes visit me at home to provide more pain relieve, just so I can sleep. In 2005, my care was transferred solely to my GP, and he began the process of whining me off the medication with milder ones. I have flare-ups once in awhile from 2008 - 2011 and went back on predosilone, but only for short periods. Unfortunately, four months ago, my Sarcodosis returned with a vengeance. My joints & bone ache, my waist seem twisted at my left side, so I have to walk twisted, my hips & waist seem to be on fire with pain gripping my waist clamp-like. Every movement I make leaves me screaming in  pain which shoots upwards throughout my body, l fall from dizziness & pain in my head. My knees lock regularly with no notice and l fall. What l find shocking this time around,is that my new GP doesn't seem to be taking this serious, despite the fact that l am a known Sarcoid sufferer. I was initially advised to buy & wear 'appropriate walking  shoes'; sent for Physiotherapy once a month, & then once a week for 8 weeks. Pain got worse, & Physio sent me back to GP to be referred to other bone specialist. GP declined to make the referral but sent me for X-Rays (only for my hips & waist) after two weeks of me 'nagging' him. Two weeks later, another Locum diagnosed me with Arthritis & gave me Naproxen 500mg to take with Paracetamol. I asked for more tests to be carried out ( Blood test, Chest X-Rays, MRI scan) but all l got sent for was blood tests. I waited a week for the blood test results, & during my next GP consultation on a Friday at 4.20pm, the Locum l saw said he will contact the hospital on Monday for my blood test results. I insisted he call the hospital that day, but he gave the excuse that the blood test department was closed. I broke down crying that I couldn't bear the pain anymore, and l will commit suicide before Monday. That was when he read my notes that l suffer from depression, and called the hospital, received one set of results....vitamin D was down again to 8, & he panicked & telephoned the pharmacy for medication and also emailed an urgent referral to a Rheumatologist to see me urgently. Three days later, l called the Rheumatologist Secretary for an appointment but she claimed not to have received the referral. So I called my Surgery & had my daughter pick up the referral letter to take to the hospital but before she got there, the hospital called offering me an urgent appointment on 6th November 2017. That's not urgent, so I've just called a taxi to go into hospital with this letter. I know I need something stronger than Naproxen for the pain, and l know that if l suffer another fall trying to manoeuvre stairs in my townhouse, It may be fatal before I am found later. 

Good luck to all you sufferers, and l pray you get the support & medication you need to get better.

Even after 6years the situation is still the same. My daughter was left unattended to like but thankfully we came across some wholistic health practitioners who help a lot with suppliments , diet and life style changes and we are happier for it. The only challenge is that the wholistic treatment is very expensive