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I have been diagnosed with CSS in 2013 after our emeritus

Customer Question
prof of immunology for Australia...
I have been diagnosed with CSS in 2013 after our emeritus prof of immunology for Australia after 3 years of research on me Dr Ron Penny , he has retired but nearly lost me on 3 occasions basically through infections , clots and suffocation plus a few other bits . I was on metatraxate 5 mg and 25mg prednisone Jan 2016 I was went off the chemo drug and got down to 10 mg pred since then I have been going backwards although asthma stopped until this week lung capacity improved from 72 to 85 but I am now on 50 mg pred and chest pain left lung pain feet and fingers joints are at a 9/10 my elbow gets so hot ie joint it burns through the rough skin and I bleed for weeks same with the outside of the nose with a very gentle rub from the Capp mask I have a dint from the bleeding ,in short I am not on thinners but the heat in parts of the body burns through the skin in May 2015 I caught a rare flu bug from someone sneezing on me and I lost lung power red cell count dropped from 130 to 82 internal bleeding that was another flat line episode heart lung isolation etc was bad . I cannot understand this disease and the attacks on the chest that I want to jump off a cliff , no
JA: How long have you had the symptoms? What seems to make the symptoms worse or better?
Customer: no pain relief works blood bloggers are coming out arms legs morphine and fentanyl patches dent pain about 1/3
JA: Anything else in your medical history you think the doctor should know?
Customer: I had Chrohns in 1986 for 2 years full ileostomy nothing since all good in gut is it related to css other than both autoimmune
Submitted: 1 year ago.Category: Medical
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Answered in 10 minutes by:
1/3/2017
Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago
Dr. Phil, MD
Dr. Phil, MD, Medical Doctor
Category: Medical
Satisfied Customers: 57,702
Experience: Medical Doctor Trained at a Top Academic Institution
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Hi, this is Dr Phil, here to assist you. I am Board Certified with over 10 years of experience. I will respond with my answer shortly. Thank you.

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Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

I'm sorry you are suffering so bad

How can I help?

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Customer reply replied 1 year ago
I have sent through 3 emails detailing my medical problem with CSS churg strauss and paid $43 no answer what is going on this is a link from the CSSA is this a scam
Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

I got the details but I want to know what your question is about it?

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Customer reply replied 1 year ago
I have had many kidney stones approx 30 , and a spinal fusion In 1998 L5S1 asthma as a child I swam for miles and cured it Crohns has been quiet for 30 years no problems as I could work 70 hours per week building church schools built a mid tier CPA firm from zero to 50 staff and Bishops would put me on School boards to turn them around in 2009 sept started getting weak and that's the start of the problems kidney prof believed the problem was greater than kidney stones formed from Uris acid he was right the top Doc for Aust firmly believes it's CSS but what in the chest is doing the damage with pain crushing pain , he puts it down to God only knows , but it comes for hours or days or weeks , I giving it 2 years then stopping all Meds and going surfing in a storm .
Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

That sounds like a good way to go!

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Customer reply replied 1 year ago
Does this disease or is this disease known to cause massive chest pain crushing in the chest centre 5inch circum and left lung like a broken rib but X-rays show no breakages . My inflamation blood test has gone up from 5 to 15 . What pain relief can help this is not living relying on tablets to keep you alive but being alive is not worth it as pain relief does not work .
I am not alone on this chest pain as health un locked in Britain every second responder is suffering in the chest.
Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

Yes it does cause this

Have you tried meds like gabapentin?

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Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

Thanks for this question

Please don't forget a positive 5 star rating.

I appreciate it

If you have more questions, just reply

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