Sarcoidosis

[livingwith]

I am 40 years old and was just diagnosed with sarcoid last spring. It began with a common cold and cough that both myself and my older daughter had. Only she got better. Mine didn’t seem to want to go away. The cough turned to a wheeze. I couldn’t catch my breath and was thinking asthma and so I made my appointment after the holidays. During this time I was so tired. But it was the holidays. My grandmother was in the hospital. My son was getting ready to have surgery. I was ...Read the full article

[hornbeam]

Hello

Just six days before Christmas I have also been diagnosed with sarcoidosis. I had a biopsy of lumps in my lungs which confirmed the diagnosis. I have also suffered bi-lateral facial palsy which has left me with a numb right hand side of the face and drooping expression and watering of the eyes. Again as like you it took from me feeling ill in May last until December and may blood tests, scans etc., before a diagnosis was confirmed. I was told at one time that I had had a stroke or had a brain tumor or cancer of the lungs which as you know is very worrying.

As you say it is an unknown condition and I had never heard of it before.

How has the condition been found in the other parts of your body - is it just via routine scans or are there other signs to look out for.

Good Luck

[lnelson]

I'm just in the process of being diagnosed now. 42 years old, I've had joint pain forever and 2 bouts of Iritis. Had swollen ankles in October which led to a chest xray and CT which showed swollen lymph node, but only on the left side. Doctor said if it were bilateral he would have diagnosed it as Sarcoidosis right away, but now he can't rule out cancer. Bronchoscopy was suggestive of sarcoid, but pretty much inconculsive. Was your case bilateral??

[hornbeam]

Yes my facial problems were bilateral. In July the left side of my face dropped. It happened overnight and luckily I was in Hospital at the time. The Consultant said it was Bells Palsey and then after a few days I had a MRI scan and they said it was probably a stroke! They sent me home on a low dose of aspirin (sarcoidosis was not mentioned at this stage) Then four weeks later I was at home and noticed the left had side of my face had started to drop. I was taken into Hospital this time by ambulance and had a MRI scan within an hour and they said I had not had a stroke at all as it would not affect both sides of my face. The right had side was more of a problem - my speech was affected in that I could not pronounce "B" or "P" and my right eye keeps watering. I was in Hospital again and had a Lumbar Puncture again and all the previous tests. I was told they suspected sarcoidosis but until they had something to biopsy nothing could be confirmed. I was referred to a Sarcoidosis Consultant (Huw Beynan) who did Urine Tests, Blood Tests and arranged Eye Tests and then a Gallium Scan which showed lumps in my lungs (on the lumph nodes around the windpipe) and he referred me to a Lung Consultant who performed a biopsy of the lumps which confirmed sarcoidosis. I would mention that when I was in Hospital in July I had a CT Scan which showed lumps on the lymph nodes around the windpipe but this was missed as I was told they were not looking for sarcoidosis.

The sarcoidosis was confirmed on 19th December and since then I have been on steroids with a reducing dose but last week the right had side of my face has gone completely numb and my right eye is watering all the time and I am starting to get tired again. I saw the Sarcoidosis Consultant last night and he has upped the steroids to 30 mg and has arranged for me to have a MRI Scan on Thursday and then he will take me off the steroids and put me on some kind of chemo drug but I will find out more about this once I get the result of the MRI scan.

The facial drop is horrible - my mouth feels like I have had an injection at the dentist my right eye lid has dropped and my eye fills up with water and then drips all the time. I have been told that the sarcoidosis is active again and attacking the 5th and 7th nerves in my face!

How is your facial drop?

[lnelson]

I don't have any symptoms right now. Just a dry cough that comes and goes. My ankles swelled up in October and that's what started all of this. They did a CT scan and found an enlarged lymph node on the left--nothing on the right. They are pretty sure it's sarcoidosis but can't confirm without a bioposy since its not bilateral. I'm meeting with the surgeon tonight. I really don't want to undergo surgery unless it's absolutely necessary. Since I have no symptoms it seems really strange to me.