Author: Karen (---.server.ntli.net)
Date: 09-04-04 02:20
Hello to everyone,
I've only just discovered this website, but have spent the last 2 days (and most of the night due to early waking!) reading through a lot of the info contained in it.
Firstly, I would like to say that it seems to be the light at the end of a very long tunnel for me.
I was diagnosed with Sarcoidosis more than 10 years ago following a chest X Ray and Bronchoscopy, but only after having "weird" and very diverse symptoms for a very long time (probably most of my life looking back on it!)
I was given a course of Prednisolone, (I can't remember how long for, but think it was just less than 1 year) starting with 20mg per day (I think!) and reducing gradually as my lung function improved.
The Consultant I was under at the time (he has since retired I believe) said he would give me as little as he thought he could get away with for as short a time as possible because he said they had bad side effects, and as I was already overweight he didn't want me to put on even more weight!
When the Steroids were finished, I was more or less sent away and told I was "cured". There was a small chance the Sarcoid could return, but it probably wouldn't.
Over the years, I have been to my GP with lots and lots of illnesses and have often asked if it could be the Sarcoidosis returning, but this has been dismissed.
The pain in my hip/back/leg, resulting in mobility problems, led me to having a hip replacement over 3 years ago, at the age of 43, even though the Orthopaedic Consultant repeatedly said he couldn't see why I was suffering so much pain!
Following the operation, he told me that during the op they found a hole in the hip socket that needed a bone graft. I asked him if this was what had caused all the pain, but he was non committal!
Following the op, at my check ups, I told him I was still getting pain and was having a problem lifting my leg from the hip, even though I was still doing all the exercises/walking etc, and had also managed to lose weight (about 5 stone) following the op.
He appeared puzzled, and remains puzzled, as do all the others I have seen since then ie: another Orthopaedic Consultant at a different hospital, several physiotherapists, and also an anaesthetist who runs the pain management clinic!
Also during this time I had to have an emergency hysterectomy due to a twisted ovarian "dermoid" cyst, which was excruciatingly painful! which resulted in me having to have further surgery the following year because of "granulation tissue" forming.
I have gone on to suffer from bladder and bowel problems since the hysterectomy, to which there seems to be no answer!
I have swelling legs which seem to fill up with water for no good reason, and have recently been having severe joint pains (again), lethargy, early waking, total exhaustion, blurred vision, migraines, pins and needles, numbness etc, to name but a few!
I think everyone I know, including my GP and my friends, think I am a hypochondriac!
I have thought so too at times, along with thinking I am going insane!
My GP has attributed most of my symptoms to the stress of losing my job, and having to fight for my occupational pension as I had no diagnosis!
Despite going back and forward to my GP, and her referring me to various different Consultants, no one has put any of this down to the Sarcoidosis, as I have been deemed to be "cured."
I have at various times been to my GP with various theories about what is wrong with me, which include "Lupus" (whereupon I was referred to the Rheumatologist!) and this was dismissed. "Behcets", "Rheumatoid Arthritis",
which incidentally my mother suffered from, although I am beginning to wonder if she did, as she seemed to have all the symptoms I have recently had, but was also told she had interstitial lung disease which required a lung transplant, although she never made it to this stage, because she suddenly died of a massive brain haemmhorage (in Australia, where she lived) nearly 3 years ago, at the age of 64!
Anyway, up until now, I have never been able to find out any information on Sarcoidosis, and most people I have spoken to have never heard of it (including Doctors!)
This website is a revolution to me, and has explained a lot!
I will continue to read it until I can go to my GP on Monday, armed with yet another lot of info, but hopefully more relevant to her as I have already been diagnosed.
On reading some of your postings on this UK link, I am surprised no-one has thought to bring this illness and the Marshall Protocol to the attention of Dr Hilary Jones on GMTV to try to raise awareness in this country!
Most people in this country watch the TV, (whilst the majority do not have access to a computer or the internet) and this is a national programme.
Maybe we could have a "National Sarcoidosis Awareness week" and bring it to the attention of the media in this way. This may provoke discussion amongst the medical profession.
I hope this has been of some use to you. I am aware I have rambled on a bit, but this has enabled me to get some things "out of my head".
Hope for some response to this, bye for now, Karen.
PS. The only symptom I don't seem to have had is the weight loss, and this is the one thing I could do with!
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