Connection of Blephritus with Sarcoidosis

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Do any of you fellow sarcoidosis patients have eye or bladder problems since being diagnosed with this condition? My initial diagnosis was detected on my lungs but has since spread to my sinuses and eyes. I'm also convinced that it has attacked my bladder but get brushed off by my doctor at hospital. 

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  • Posted

    Hi Rachael. Yes, I have experienced dry eyes for a while. And the other complication is that, if you're on steroids, these can also affect the eyes.

    Not sure about bladder problems, as I have now hit the age when lots of men begin to get prostate difficulties too.

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  • Posted

    Hi,

    I have bladder problems, my urologist said it is something called IC for short (I can't recall the full name). He said its common with diseases such as sarcoidosis. It's basically severe bladder pain. I can be fine one second and in the worst pain the next then unable to go. Google "bladder pain IC" and read about it to see if it matches your symptoms. Talk with your doctor or find one you can talk to. Your bladder pain may not be related to sarcoidosis at all and shouldn't be ignored if it continues so keep after your doctors till they listen. My sarc Doctor told me to talk with my primary care ... That Doctor then sent me to an urologist.

    I wish you the best.

    Deb

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  • Posted

    I was diagnosed with sarcoid on the lungs but I know have eye issues uvitis I beleive its called very uncomfortable I also got arthritis as well no bladder problems though.
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  • Posted

    I have sarc in the legs and I have eye problems. I've been putting it down to a lifetime of welding but perhaps it's the sarc??

    Ta

    Terry

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  • Posted

    Hi Rachael

    It is my understanding that eyes are effect by sarcoid.

    They become dry and light senitive.

    Tears natural help with the dryness.

    Sunglasses help with the sun.

    Sinuse, I do not know but I am having problems with my sinuses so it makes me wonder.

    I think sarcoid causes many issues but the doctors do not want to know past issues with you lungs.

    I believe it also commonly cause enlargement of the liver and spleen. I have both but can get the doctors interested in solving these issues.

    Anyone out there who knows how to solve the issues of enlarged liver and spleen please let know?

    Regards

    Tangles

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  • Posted

    Thank you all for your responses. I've been reading up about sarcoidosis and fortunately my eye consultant agreed that the blepharitis is definitely connected to the sarcoidosis. I'm getting problems with my feet swelling and lower legs which could possibly be connected to it as well! Re the bladder issues apparently sarcoidosis can attack the part of the brain which makes the liver over active and leads to excessive urination. Have yet to get confirmation on this but it's been on going for years now.

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    • Posted

      You have made some interesting comments.

      My feet and ankles swell up especially in the warmer months.

      I have enlarged liver and spleen I believe from sarcoid.

      An abdo ultrasound will easily identify an enlarged spleen and liver.

      Suggest you take that course of action with your symptons.

      I believe my liver and spleen is over active. I have a low platelette count due to in my opinion to the over active spleen. A simple blood test will tell you if you have the same problem.

      Let us know how you go?

      Regards

      Tangles

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  • Posted

    Hi Rachael, 

    I was just diagnosed with Sarcoidosis 3 days ago and it all started with a visit to a urologist who diagnosed a flaccid non-functioning bladder. He wanted me tested for MS and said that the flaccid bladder and my other symptoms was identical to those of his MS patients. 

    My neuro ordered a lumbar puncture, tons of bloodwork, MRI's and x-rays then sent me to a MS specialist who added a bunch more bloodwork to the mix. Not wanting to wait till my appointment which is 2 months aways she called to tell me I have Sarcoidosis and was going to talk personally to my neurologist to discuss treatment as the specialist is 4 hours away and I need care closer to home. I also have bilateral trigeminal neuralgia (severe debilitating face pain) and was seen 4 years ago by a MS specialist 6 hours away who diagnosed me with neurosarcoidosis but my local neurologist said no. Now with 2 MS specialists basically saying the same thing I am finally convinced and will push for treatment. If needed I will get a new neurologist and I am thinking about consulting a rheumatologist as well. I have just started with all the coughing and now some chest pain so I am going to see my primary care doc on Monday. 

    I wish you good days, hugs. 

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    • Posted

      Goodness you have got a lot going on but at least they are on your case and you haven't had to wait too long. Are you in the Uk or U.S.A?  Think treatment is better in the States. Hope they look after you well wherever you are. Rachael

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    • Posted

      Hi Rachael, I am in the USA and I have been dealing with all of this (except the bladder) for 6 years now. I have been to so many doctors trying to find out what is wrong with me. This is my second round of lumbar puncture and MRIs the first time was in 2011 and nothing was conclusive. I am not happy to have Neurosarcoidosis but getting a diagnosis after so long at least I can make a plan on how to get better or at the very least not worse. I think doctors everywhere just don't care as much about their patients as they should. It's hurry though the appointment to get to the next and make that money. I hope your day is a good one. Hugs.

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