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Found out i have sarcoids on 7/15/15 and i am scared

Posted , 9 users are following.

tizzle45
tizzle45

Well i was having black floaters n my eye. Now its more like black cob webs. I went to a retinal specialist and after 30 blood test he found that i had ssrcoids. Idk what is happening to me i get fevers all the time. Then all the sudden my leg goes out at the joint and i cannot walk. Then it kept getting worse and i saw a orthopedic doc and he had me n surgery the next day. He pulled alot of fluid out but said it looked likenthe sarcoids caised it. Ive lost 30 pounds and i am tall and skinny and now people look at me like i am on meth. I have no appetite and i just cant seem to eat. I just cant seem to get to the right doctor thst knows enough to help me. I still pretty much cant see out of my eye the fevers are driving me crazy and now because i cant walk i cant work. Im only 29 and i feel like i am 79. I dont kno how much more mentslly i can take. If it stays this bad i cannot live life like this. I just wish i knew what to do and a doctor that will help me insteaf of giv8ng me a run around.

2 likes, 13 replies

13 Replies

  • magdafloasiu
    magdafloasiu tizzle45

    Posted

    Hi Tizzle45,

    I'm really sorry that you're going thru all these. As far as I know, sarcoidosis can cause fever, but not that high. I used to have low-grade fever during active periods of sarcoidosis (37-37.3 degres C). In my case, sarcoidosis was combined with TB, which led to higher fever (37.5) and loss of apetite (and weight, of course). In my opinion, you should have some blood tests done for infection (like Erythrocyte sedimentation rate and maybe more complex tests) to see if there is an infection that explains the high fever.

    In most cases, rehumatologists know more about sarcoidosis than other doctors. Try to find a good, renowned rheumatologist and go see him. I'm sorry that I can't help you more... I know how it is to feel like you are 79 years old (i've been there), but with a good doctor, there are chances to be OK. Just ask around, try to find people who suffer from sarcoidosis in your area and ask them about the doctors they see. Or check over the web for the best rheumatologists in your area. There must be someone who can help you; just don't give up...

    Good luck and hope that you'll be fine one day...soon.

    All the best,

    Magda

    • parvezchandio
      parvezchandio magdafloasiu

      Posted

      Hi dear

      I am sick since last ten months with symptoms like 1). Low grade fever normally in evenings just for a hour or so. 2). Upper Back pain 3). Joint ache. 4). Dry mouth. 5). Fatigue

      Doctors have placed me on anti tuberculosis drugs since last seven months. Symptoms have reduced a little bit but I still think ill. Few doctors have anticipated sarcoidosis. I am now totally confused. What to do. Can you help?

    • magdafloasiu
      magdafloasiu parvezchandio

      Posted

      Hi, I'm really sorry for not replying. I just saw your message now...

      tuberculosis can be responsible for low grade fever in the evening, upper back pain (but only if the pain varies with the breathing; it should be more intense when you breathe in), and fatigue. Dry mouth can be caused by medication. However, joint ache is a sign of sarcoidosis and not of TB infection. I'm not sure if this message will help you now, considering that you sent me the above message 12 months ago...I'm really, really sorry!! It seems the system doesn't send all the notifications it should...

      I hope you're feeling better and you have a clear diagnosis. Please let me know how you are.

      All the best,

      Magda

  • senga66
    senga66 tizzle45

    Posted

    You poor thing. First thing is Google best Sarcoidosis specialist, you have joint and eye problems so you need the best in there field that has a good knowledge of Sarcoid. I have had Sarcoidosis since 2004 but was only diagnosed in 09 so I had five pretty rough years.  I get fevers of over forty when I have a flair up so I always keep paracetamol handy as it helps lower my temperature. Are they giving you any medication for your symptoms? Sending you love and prayers.

    Senga

  • barbara1449
    barbara1449 tizzle45

    Posted

    Hi tizzle45. I'm so sorry you have sarcoidosis and are feeling so ill. I was diagnosed around 1999 but had it for many years before that. Since sarcoid can affect any and all parts of our bodies you need to see multiple doctors. I was finally diagnosed because it appeared that I was having pneumonia almost constantly until after 6 months I was still coughing and couldn't get my breath but wasn't sick. Also had very bad bone and joint pain. So I saw a pulmonologist for a biopsy and treatment and then a rheumatologist for his input. If you have eye involvement you need to see an opthamolgist.
    • tizzle45
      tizzle45 barbara1449

      Posted

      Yeah i saw a retinal specialist hes the one the found i had sarcoids. I can have surgery on my eye and have a chance of going blind or just live with all these floaters and cob webs. I finally saw a doc today that referred me to a rheumatologist or how ever u spell that. I just wish these low grade fevers would stop already
    • barbara1449
      barbara1449 tizzle45

      Posted

      Super! Do you have your rheumy appt yet? I have not had eye involvement so not familiar with that treatment.
  • Ruby54321
    Ruby54321 tizzle45

    Posted

    I am sorry to hear about this. Stay positive. I also have sarcoid in the eye. I do not have a fever though. I have had sarcoidosis since 12, in the skin, which went away, and came into the eyes around age 15. I am 24 years old now.
    • beckysrs
      beckysrs Ruby54321

      Posted

      I had sarcoidosis when I was 34 and thought it went away.  Now I'm 63 and have experienced bleeding in my left eye with no pain.  I go to a specialist on the 28th to see what is causing it.  Can you tell me what your symptoms are?  Not sure if this is the sarcoidosis coming back in my eyes or not.
    • Ruby54321
      Ruby54321 beckysrs

      Posted

      Hello...

        I haven't (thankfully...knock on wood)) experienced bleeding in the eye...howveer I have uveitis..and iritis...which causes red painful and blurry eyes...and the chance to lose eyesight if not controlled...I am on presnisone pills, eyedrops and methotrexate injections..... it is a battle...and trial and error....not sure what to do. 

  • romy55
    romy55 tizzle45

    Posted

    Hi Tizzle45! I know this may seem like a bit of a long shot, but for me personally doctors were absolutely useless and literally said there was no more they could do for me if I didn't want to go on steroids, so although I am not exactly your typical hollistic/homeopathic believer I seriously have started to see real results from acupunture from a local herbalist.

    I was EXTREMELY sceptical at first, but I didn't have any other options so I thought I might aswell try it! I began to get really frustrated and impationt because I wasn't seeing results straight away but now I have been going weekly for about 5 or 6 months and I am really, really seeing results.

    If you would like to know more I would be more than happy to give you his details!

    My family have been going to him for years and I have complete faith in him.

    Hope you're feeling a little better and maybe you'll have better luck with doctors than I did!

    Kind Regards,

    Romy

    • diane22518
      diane22518 romy55

      Posted

      Hi romy55,

      I was reading your posts about acupunture. I seriously DO NOT  want to take steriods either. I have searched the internet over for something else. 

      You mentioned that you have postivite results; what were your symptoms before acupunture and have did it help you?

      I have chest pains when doing anything. it's hard to breath and I get really hot and sweating. Every Dr I have gone to quickly say it's menopause. I even get EKG's for heart condition because they don't seem to know exactly what is causing what.

      I saw a Renal  specialist because now I have blood  in my urine and I have to have an ultra sound. It's one Dr or another. 

      I was told I needed to take steriods and I am afraid.

      Pleas tell me all you can about your treatment from your herbalist.

      Thank you,

      Diane

    • barbara1449
      barbara1449 romy55

      Posted

      Statistics show that about half of patients with sarcoidosis recover with no treatment at all.
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