Sarcoidosis

Reply

Steve Posted: 11-26-2009 6:02 AM

rated by 0 users

Hi Everyone

I am new to this site but have read some of the threads and thought it would be useful to share my experiences with sarcoidosis, so here goes.

Late last year, about November time I arrived with my wife and children at a family birthday lunch. I had driven for about 40 minutes to get to the venue and had felt fine, although I had had a headache when I woke that morning. Anyway within minutes of arriving at the venue I started feeling very ill and faint. I had a drink of water and went to sit down. Someone noticed I wasn't looking well and mentioned it to my wife (she is a nurse) she came over and asked what was wrong, I said that I felt faint, at which point I passed out on the floor. I only briefly passed out and came around within about 2minutes, with a very sore head (as the floor was wooden). Thankfully, having married into a medical family there was one Dr there and 3 nurses, so I was well cared for.

However, I ended up in hospital for the whole afternoon (missed the lunch) and felt a bit of a fraud because other than a sore head I felt fine.

I then went to my Dr the following day and I was sent for a load of tests (some where done privately through my works healthcare) they started at the top and slowly worked through what could have caused my fainting.

I had a MRI of my brain (and yes, I know have proof that I do have one), I also had an EEG (I think that is what it is called). these were negative.

I then had a 24 hr ECG, which was great fun in work. This again was negative. I also had half my blood taken at various times, I am sure the hospital has more of it than I do. I had a four hour glucose tollerence test (checking to see if I was diabetic).

As you can imagine all of this took time and I had started to have regular hypos, although these could be controlled by eating. I also had an episode where I was bed ridden for 2 weeks with extreme sweats and total exhaustion.

Again though I recovered and was fine, at this point I had been passed to a Consultant Endrochronologist (apologise if my spelling is wrong) who sent me for various blood tests and also for a Cat Scan to check my pancreas.

A couple of days later I got an urgent call that they wanted me to go into hospital for a biopsy. As the Cat Scan had shown that I had swollen lymph nodes in my stomach (and clearly they thought I had cancer). When I went into hospital there were various delays and a chesh consultant came to see me and he looked at the scan again, believing that he could see something else anyway I was sent for another cat scan this time of my chest. The following day the consultant informed me that he was fairly certain that I had Sarcoidosis.

As you can imagine I was taken aback by this (once I knew what it was and had looked it up on the internet, however at least it wasn't cancer).

I then left hospital and it took about 2 - 3 weeks for them to arrange a bronchal biopsy to confirm the diagnosis. I then had baseline tests done of my lung functions, a chest x ray and more blood tests.

By this time I had a regular cough and the skin around my ankles had become bluish in colour.

On seeing the consultant I was put on 40mg of steroids each day, together with a drug to counter the acid effects of the steroids, which i take daily and also calcium and vitamin D tablets to counter bone density problems that can be caused by the steriods.

I noticed an immediate improvement, in fact initially it was great as I had no pain anywhere and felt like superman. It is now about 4 months later and I am down to 15mgs a day and will reduce to 12.5mgs in a few weeks. I have been told that I will probably have to take the steriods for at least a year but I am seeing my consultant about every 6 weeks and he is monitoring me. Unfortunately I have put on weight, which I am now trying to lose, this isn't going to well as I love my food and Christmas is coming...

Since starting the treatment I have had one crisis, where I was extremely tired and run down, which my GP put down to withdrawal from the steroids as the dose reduced. I do get breathless (but I am also astmatic, so never sure what is causing it) and my knees ache all the time. I have always been a bad sleeper and this is now even worse (i have been up since 4am). I do get mood swings, so have to apologise more than usual.

That said I have started a new more senior job (I had a medical for this and was passed as sarcoid generally goes into remission) which involves quite a bit of travel and I am really enjoying the challenge. It has given me a new focus and challenge in life. My wife has also been incredibly supportive and helped me through a few difficult moments.

Well I hope that people find this of some interest and that it gives new sarcoid suffers some insight.

Reply

craiggc replied on 11-26-2009 9:06 AM

rated by 0 users

Hi steve - welcome to the forums and thanks for sharing your story - im sure that will be useful for people.

Reply

Keith Bowcott replied on 02-01-2010 10:09 PM

rated by 0 users

Steve, 

Your story sounds very similar to my own, it all started when my right foot and ankle became swollen to twice its size, and I went the A&E they suspected a DVT and did all the tests etc which included a chest Xray.  I was admitted to hospital for a week during which time the other ankle became very red and swollen as well.  The Xray consultant spotted that my lymph nodes were enlarged and suggested that we needed to check it all out, at this point the various consultants mentioned Sarcoids as well as a raft of other things such as Cancer, TB and Lupus.

My ankles returned to normal after massive doses of penicillin, and it was then decided that i had celulitus, a few days later I had a massive allergic reaction to the drugs I was on and ended up back in hospital for another week.

I then had a mediastenoscopy to remove  a sample from my upper chest, unfortunately this showed nothing and i then was scheduled in for a mediastenotomy a much bigger and invasive procedure to go deeper into and behind my lungs.  This gave us a firm diagnosis of Sarcoids, in the mean time between operations I was unfortunate enough to have a TIA (Transient Ischemic Attack) or mini stroke, we believe this to be associated with the sarcoids.  That op was very painful post surgery and sneezing felt like that thing out of alien was going to burst out of your chest at any second.

I am awaiting treatment to start, hopefully next week or so after lung function tests etc and hope that I will be on the mend soon.  I suffer extreme fatigue, joint pain and headaches at the moment and am told that the steroids will help almost immediately, one thing that worries me is the weight gain, I lost about 4 stone in 8 weeks, and would like to keep the weight off if I can.

Hope you are also on the mend and it goes for ever!

Keith