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At last i found a site..... .so i no im not alone !

Posted , 6 users are following.

amanda07299
amanda07299

So good to have found a site with other who suffer from Sarcoidosis ....having been under a specialist for the last  year , had lots of  xrays blood tests done  the biopsy etc .....i began to feel no one really cared when i said i have a tight chest i cannot breath on bad days ..and i sweat so bad at night my sheets are wet thru ,i do have have sweat attacks at random times thru out the day n tired too  but not everyday .....n my vision is blurred even with glasses .i told my consultand this on my last visit .he said ok .il see you in six months time !!!! im getting so down with it all its almost as if you look ok so your alright ...im gona go to my doctors and see what he says but i think it will be pretty much the same as most of you have said.........to be honest  id never heard of sarcoidosis  up until then  im just so glad ive found this site !

0 likes, 10 replies

10 Replies

  • Felfin
    Felfin amanda07299

    Posted

    Hello,

    it's so nice to chat to others who are experiencing similar issues, that's for sure. It can be so very frustrating and lonely to deal with this illness. Doctors as well, often don't understand what we are going through. All I can say is remember there are others out there who do know what you're going through. And, unfortunately, so etimes you really have to out your foot down and try numerous doctors before you find one that will really help. Try to get in with a consultant who specialised in sarc, like at Royal Brompton. I am having some issues getting in for treatment soon enough, but I do trust the specialists there that they know what they're dealing with at least. Good luck and best wishes.

  • kirsty1963
    kirsty1963 amanda07299

    Posted

    Hi I know how u feel glad to hear others with the same symptoms, I got diagnosed now 8yrs ago with neuro and pulmonary sarcoidosis. I had been ill sone 3yrs previous seeing doctor after doctor. Still all specialist ask to see me with students as it really is only just becoming a recognised illness. I was told I would be in a wheel chair within 5yrs and now 8yrs I still run a hair salon and am walking aided with a stick but have a  relatively normal lifestyle. Live with set backs pain not breathing too well. But hearing others and their stories I find good so I hope u too can wright up your difficulties and get support or ideas of treatment it where to go. This illness is so awkward to diagnose that they did a series of HOUSE on the TV about a patient in America with mixed symptoms. I seem too gave it told by some Americans on their support sites that it is becoming recognised more in the USA and feel it's not passed through the families but more likely because of  environment and pollution it's gave me food for thought as I live close to the M25. I wish you well diagnosis and treatment x
  • senga66
    senga66 amanda07299

    Posted

    Hi Amanda, 

    So sorry you feel alone. This is a great forum with people like myself who have had Sarcoidosis for many years and people who, like yourself are relatively newly diagnosed. 

    The sweats are awful aren't they, I've taken to buying bandanas in bulk! They stop the sweat stinging my eyes :-). Sarcoid is an awful disease but there is a lot of help on this site, you will learn a lot just by reading the forums alone. If there's anything you want to know? Just ask, you will probably get at least one answer. Take care, and most of all take care of yourself. 

    Senga66 

  • tangles
    tangles amanda07299

    Posted

    Hi Amanda, 

    May I ask if you are on a steriod treatment program?

    Regards

    Phil

    • kirsty1963
      kirsty1963 tangles

      Posted

      I have been on steroids but the last 2years I have been on an anti rejection live transfer tablet called myvophenolate with fabulous results I have even been able not wear my foot/leg brace as been do strong. Unfortunately I have a set back this month do am about to go in hospital for steroid drop also. I have very active sarcoidosis in lungs and brain even now interfering with my speak, I cause family to laugh as I say words that are wrong like '' I fancy Saugus and crackers for lunch'' I ment bananas or I stutter, also breathing is difficult. They blame stress on my state as I have just divorced. I don't like balloning up but I need my speech. Last time on steroid drip after 2 days felt like weight had been lifted of my chest so steroids are needed at the moment but I will wean myself off oral steroids as soon as possible so weight drops as am normally a size 12 and ended up a size 16. Also I get steroid induced diabetics can be type 2 when off steroids and 1 whilst having the drip for a while. I hope this answers your question and hasn't left you scared as being fatter is a small price to feel good. Best wishes Kirsty 
  • morag7
    morag7 amanda07299

    Posted

    Hi Amanda

    I guess I'm the lucky one on the forum because I have a supportive doctor who actually put me onto this site for basic info about sarcoidosis and because he knew it had a support forum too. If the consultant won't do anything I'd say go back to your GP even if its just to ask for a referral to an eye specialist. Or even go to the optician for an eye test. They can refer you to a specialist as well - or at least they can in Scotland (I realise it may be different in other areas of the UK and the rest of the world). 

    Meanwhile you have us mob to "chat" with, there's bound to be someone else who has been through similar problems

  • tangles
    tangles amanda07299

    Posted

    Hi Amanda

    I have had sarcoid for approx 30 years. 'This forum is the first time I have been able to chat with follow suffers. I think the site is just great. Just some of the conditions I have never been able to discuss with anyone.

    I have had night sweats for years but did not know it was connected with sarcoid. 

    My brother and I both have it. One common item of interest after we got over the worst of the first stage was that we were both drinking huge amounts of coffee!

    We lived independently from each other and this was an interesting discovery years later...wonder if there is something to this???

    Tangles...Phil

    • kirsty1963
      kirsty1963 tangles

      Posted

      Wow!! That long I'm surprised they diagnosed it as I struggled to find what was wrong with me for over 2 yrs and now I struggle to find medical people who know what sarcoidosis is let a lone help me with it. That must be very hard on you both having being diagnosed the same. I like a cuper tea not coffee but I have been told to avoid saccharine. I hope you find this forum helpful as I have  
    • tangles
      tangles kirsty1963

      Posted

      Kirsty

      Thanks for your reply. I am suggesting that perhaps caffeine has a part to play in suppressing sarcoid. This has been something playing on my mind for many years. Whilst it may appear far fetched the doctors have few answers other then steroids and they do not suffer all of the consequences that steriods cause. I am suggesting prehaps steroids with caffeine.

      Why to gym junkies want steroids? Its side effects are hard to live with!

      Tangles...Phil

    • kirsty1963
      kirsty1963 tangles

      Posted

      Thanks it's all worth a try as 8 yrs ago I was diagnosed and they said within 5 yrs I would be in a wheel chair I'm not I'm working in my own hair salon and I tootake steroids   but only short bursts and refuse to stay on them as they made me diabetic. I have lots of alternative treatments like massage, reflexology, all to help the body drainage keep all areas stimulated. No one can believe I am still mobile so I believe positive thinking take all medication as needed but whin yourself off them for periods so your body can return to some normality and alternative therapies really may help

      Kirsty 

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