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My welcome to the world of Sarcoidosis

Posted , 7 users are following.

dave84416
dave84416

On the 21st May 2014 I went to get the result from a mediastinoscopy sarcodosis on the 21st May 2014, I was admitted to hospital and then spent the next 18 days at the request of the NHS due to possibility that it was neurological sarcodosis.

My treatment started with IV treatment for the first 4 days and then moved on to the tablet treatment and after a lot of MRI and CT scans i was allowed to come back home, as they did not think that it was neurological sarcodosis.

BUT WHAT HAPPENS NEXT !!!!!!

 I was discharged with a big bag of medication and left to it as they say.

I have not been able to work for the first two weeks due to the fatigue, I would find that I would run out of energy but 12 o’clock then I would have to take to my bed.

 

My symptoms are

 

1 Chest Pain

2 Coughing up of Blood

3 Nights or Day Sweating

4 Short of Breath

5 Pins and needles in my left hand side Face Arm and Leg

6 My left hand will lock up and not

7 Pain in the eyes and excessive watering of the eyes

What should happen next should I have been seen by someone by now as I have been out of hospital for 1 month, my local GP is very good but it is not an area that he understands (at least he is honest) he has referred me back to the consultant at the hospital.

My GP has told me that I am only to work part time for the next two months and then he will review it again.

My questions are

 

I do not know how far this disease has gone in my body I am still waiting for a MRI scan of the heart to be done.

The medication that I am on could be working but if it is I do not feel any different than before.

New things appear every other day blisters on the face and head.

no power in the legs and arms

Has anybody out there got any idea what I should do next with this

 

All thoughts welcome

 Many Thanks

1 like, 16 replies

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  • frustrated61
    frustrated61 dave84416

    Posted

    Hi Dave ~

    I will go into discussion later.  I thank you for sharing your experience.  I wonder though, have you seen a rheumatologist? Sarcoid is inflammation and being treated by a rheumatologist will deal with that.  It doesn't matter where you have it, it's autoimmune and inflammation!  I hope you get the help you deserve.  It sucks to have sarcoid and I do know that because I've had it since 2005...the doctor did a biopsy of my lungs.  As I said, I'll write more later...I'm so tired smile

    frustrated

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