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18, STILL going through the diagnosis process, new symptoms, will I be stuck in limbo forever?

Posted , 8 users are following.

romy55
romy55

Hi all,

I often find it comforting whenever I read any posts or discussions. It reminds me that I am not completely alone.

In my previous discussion I mentioned the symptoms I was experiencing and how my doctor - or should I say any of the doctors I was seeing - were not taking me as seriously as I would have liked and eventually just stopped trying to get to the bottom of whatever it is I have. The mention of sarcoidosis came from a herbalist who I have been seeing now for about 10 months or so and I have noticed small changes, but nothing that I feel is worth talking about. 

My new symptoms include coughing up blood, bruising, tension headaches, extreme breathlessness from even the most simple tasks and swollen knees. 

I was recently informed that I had a new GP, so although I hadn't been for a checkup in around a year, I thought I would give it a go and speak to her, especially since there were a few other things that weren't happening before. This turned out to be completely pointless and she just said what everyone else is saying. She looked back on my many notes and because my blood results were coming back negative and without answers - which were from over a year ago!! - she said she "trusts the results and the specialists and the truth is, some people just have these pains" and "we have done the testing for sarcoidosis and you really would be very poorly if you had that". I have never had a biopsy or anything whatsoever to test for sarcoidosis. 

As an 18 year old girl with all of these horrible symptoms, at the moment I am really struggling to comprehend that I could just have these things for no other reason than "just because I do". So many people and doctors don't understand because I look "normal" and I don't look like a stereotypical "sick" person.

I have made yet another appointment today, and I am going to be a lot more stern than I have ever been because it's really getting to the point where I just want to give up. 

I'm just looking for some advice on how to get through to them and get them to take me seriously.

Warm Wishes,

Romy

2 likes, 12 replies

12 Replies

  • Squarky
    Squarky romy55

    Posted

    Hi,my symptoms were rash on shins and lumps under the skin and also the black in my tattoos swelling up...they cut a lump from my wrist and it came back I had skin sarcoidosis and was given a course of tablets, I had to have my thyroid checked every week with the medication....since 2001 I keep getting flair ups of joint stiffness and rash and also my knees swell up but there are loads of other symptoms linked like dry eye or constant dry mouth....this is with skin version though

                   GoodLuck.

  • amanda93807
    amanda93807 romy55

    Posted

    Hi Romy, I have just read your post and thought I'd give you a quick message. First of all I'm sorry your feeling unwell and gid bless you. My husband in 2008 was diagnosed with neuro sarcoidosis in 2008 and I can assure you it took several weeks as all the tests showed nothing. He had liver biopsy nerve biopsy and uncountable ct scans, Mri scans, a pet ct scan. By the end it was prognosis of illimination and for the doctors to get off their bums to admit he was poorly the straw to take him in hospital for tests was I went in the doctors and asked if they could help me vestry hum in the surgery as he couldn't walk. I do hope you have someone else spark from you to fight your corner honey.push them doctors as you know your own body. There is obviously something not right so push for more tests. God bless you again. Good luck. Mandy x
  • Nana_Deborah
    Nana_Deborah romy55

    Posted

    Hi Romy,

    Sorry but I believe giving up is not an option. Before I was diagnosed I was going to emergency every other day because of trouble breathing and coughing to the point I felt my ribs would break. Every doctor had a different idea what was wrong with me and one even sugested I try some Adivan and seek help from a phyciatrist. It was with the help of one doctor who actually looking at the referalls from exray that the Sarcoidosis was diagnosed. This doctor sugested that I get a copy of all test results so I have a record, take control of my own health. It helped me from feeling like I had no in put in my own health. If you are not getting the care you need than you need to look in a different direction go see as many different doctors as it takes to get the health care you need. Not all doctors are not familar with Sarcoidosis. I was told by a Pulmany Specialist Sarcoidosis is different in everyone. 

    Hope you find the care you need.

    Deb

  • chris0814
    chris0814 romy55

    Posted

    Hi Romy,

    I agree with Deb. I just had a 4 day stay in the hospital on IV Steroid therapy and Methotrexate. I did have Biopsies on the noides. I am now seeing a Rheumatology specialist now and he seems to know all about this disease. It never goes away or in remission he can only control the symptoms and the spreading of the noides to other organs (hope)

    • Granny1957
      Granny1957 chris0814

      Posted

      Chris this is Georgia but on my thing is granny 57 let say first it is good to find out I am not the only who has sarcoidosis I want say I got it in 2005 I have in both lungs just recently move behind my liver I have accept what I got no cure and yes it does make me mad I take a lot Med and often at night had to retired you said this reheumatology know alot about what we got is there stages to this or what my Dr where I live don't to much about this we play by ear all I can get out them horrible death I go Dr all the time but I like to find more about hopefully you can tell me thank you georgia
  • tangles
    tangles romy55

    Posted

    Romy

    Sorry to hear that you are unwell and getting the run around.

    ?Two suggestions

    ! get chest xray

    2 referal to a respiritory specialist as these are the ones that sort sarcoid.

    Regards

    Tangles

  • kenny24313
    kenny24313 romy55

    Posted

    Hello Romy,

    Firstly, I am sympathetic to your experiences. I have been diagnose with this dreadful disease and was in denial mode for quite sometime until breathless forced me to be on oxygen 24/7. I had prescriptions for steroids but decided that i can overcome this on my own.. that was misadventure.

     

    Sarcoidosis is an auto-immune disease so your immune system has been compromised. It is difficult to explain your symptoms to doctors since you look very normal and at times you feel in excellent health. The shortness of breath is could be a result of many other illness. Can you have your parents accompany you on your next trip to you GP? You will need to see a Respiratory specialist or a pulmonologist. Chest Xrays. MRI, Biopsy of the lungs and a lung lavage will be performed... Then your illness will become apparent to those who disbelieve you.

     

    I look normal and you would not be able to tell that I can basically pass out if I exert myself too much.. just getting up too quickly at times is enough to “knock the wind out of me” and I struggle to regain composure. Walking up a few stairs also proves to very challenging. I don’t cough blood but have frequent sinus issues. My chest feels like someone punched me a few times, feet and ankles gets swollen and painful.. just wanted to point out some of symptoms.

     

    Take care and I hope you get the treatment you deserve, you are very young so steroids should work for you, the side effects of some drugs used to treat this disease could cause you more harm than the disease itself. Prednisone is what I take.  

  • Granny1957
    Granny1957 romy55

    Posted

    Keep on fighting you will get youranswer some Dr don't know about what we got that why you got to keep them God bless you georgia
  • Squarky
    Squarky romy55

    Posted

    Hi

         I have messaged before and still been on countless amounts of steroids but just had a chest X-ray and now going for CT scan ad something has shown up🙃Some sort of thickening in my lungs and inflamed lymph nodes..........could be getting some were at last

    • Granny1957
      Granny1957 Squarky

      Posted

      This is Georgia I go by granny 1957 first I want to say how sorry I am than found another you know you get mind set and then you go back all over again to get your mind set I feel better knowing your not alone that helps did than ever say this has stages mine in both lungs just started in a new place behind my liver I keep having dry mouth my skin hasn't done its thing
  • Granny1957
    Granny1957 romy55

    Posted

    This is Georgia I go by granny 1957 I am so glad you not giving up it makes me feel so proud of youand yes you do have tell the Dr no matter if you get mean this is not there body it's yours have them do a chest xray don't ever think you are alone your not we are always here for you God bless you georgia
  • Granny1957
    Granny1957 romy55

    Posted

    This is Georgia granny57 did you find out any news yet
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