Question: I have some form of myositis - 20 yr + history, only being diagnosed now because I asked for CK tests. Refrerral in process. Am now taking Prednisone till see specialist - don't like that. CK was down after a weekend in bed till I could get tests. It cannot get higher as it belches my kidney areas and muscle pain under ribs up Psoas is ripping - can handle 3 days; 4th day I would go to Emergency where I am sure they would keep me due to past neglect and valid history of 39 yr of lumbar stenosis 3 levels; golf sized gaul stone ignored; concurrent with this other history; because I do not have an income, I have to do my own tree removal - harder in suburbs than bush due to property risks - 45 feet trees - when I work along side professionals they learn from me (as well as teach me) because I think ahead and prepare which means I can get 2-4 times the work done using my head. If Emergency did not take me I would be step from suicide due to the extent of pain, fatigue and lack of resilience-intolerance to noise, movement, questions - I would commit to mental instituton; I am safe as I have a deep faith in Christ who suffers with me; I care for mentally ill and have commitment to life in all suffering, etc. Problem is I am worried the Prendisone will mask my daily reality; I go outside to do yard work, get hyped and suffer extreme insomnia from the hyperactive inflammatory conditions which stir up restless legs - Zifrol and Endep wipe me, as does Clofen, and allopathic, etc - all ignore this myolosis/mositis, which is why I asked for the CK test but only after I had spent days resting due to weekend and the fact that I had the care of a mentally ill person on the weekend - all I could do was sit beside - not even talk too the person. No disrespect, but cost of this?
$250,000 mortgage at age 57 - loss of hundreds of thousands income - no employment on horizon - over $100,000 on treatment for daughter Amy's story 60 minutes au Amy's Story - 60 Minutes - Ninemsn
WWW.WWWW.WW au/article.aspx?id=0000‎
As a Pastor I could work if they let me pastor, but parishes and denominations discriminate too - fact as opposed to biterness

Thank you, Drl Okia.

Your reply is reassuring. I get plently of counselling as I could not go it alone in my situation. I can see the need for reviews of CK... I looked into this years ago, but could not get the support. Now I have it I will not let it go. My GP agreed to let me 'gate-crash' his surgery. 2 Ques: what anti-biotics? Why an orthopedic surgeon since I already have the Neuro-surgical team in an Australian public hospital watching over my file (they said I had key hole, but 4 other back specialists said that I definitely did not have key hole surgery)?

I have a Psychiatrist who has fought for a physical diagnosis for me and has provided me with titrating regimes to manage and experiment...
I have my local GP (s) who manage my case
I have the best pain treatment in the world though not a cure via Dr XXXXXXX MacKay
I have consulted 3 other muscular-skeletal specialists (2 lecturers - 1 who could not speak highly enough of Dr MacKay's case history). 2 are top in proltherapy here - they are the most perfect gentlemen and acknowledge their treatment may not help me.
I have a pastor who attends me - not local, but friend
I go out of my way for any need or I would not cope with daughter's illness
I have a GP who uses Low Dose Naltrexone to treat my RLS as it has no side effects like all other meds I have used - so I used his support and my Psychiatrist to get off sleep meds 0- but gapping issues with sleep which I believe are related to the myositis - Now I will persist with this as the focal to get balance and health and sleep.

Any little pointer from you will be a blessing.

Thank you very kindly for taking so much time and taking me seriously,
XXXXXXX
That is not saying a lot


Thank you,
XXXXXXX XXXX