PIONEALOMA
Posted , 2 users are following.
G'day from down under Australia... Well I am 38 I have SLE lupus , degenerative disc disorder , scolliosis , stage 2-3 kidney failure. I had a Tia in 2007 , was diagnosed with PIONEALOMA . I went to my rumatologist yesterday expecting help with my lupus.... Only to find that he is more concerned that my PIONEALOMA may have changed to be cancerous. He thinks that my simptoms are not lupus or kidney related , but are from the PIONEALOMA change... Blood and urine tests show low b12 ... Low vitamin d... Amemia... Stage 2-3 kidney falure... I have gone off my food.whish is strange for me. I have trouble seing , which can be lupus or the PIONEALOMA . I am looking upwards..my eyes are not looking normal. I. Am having migraines again. And some weakness down my left side.
My question is... Does anyone else have PIONEALOMA ... And has it changed.... Has any one had these symptoms .... I am beside myself with worry... I will have an MRI in about one month time.... So for now I need some help ... Please... Anything will be appreciated ...thank you. And in addition memory loss. Sorry ...c I'm jot thinking straight. Thanks again.
0 likes, 5 replies
Florabunda tracey82876
Posted
I think you should be having a CT and PET scan as soon as possible. "oma" - always means a tumour - but very many are benign - but they do distrub all your systems.
Also B12 deficiency really makes people feel terrible; so many of your symptoms can be down to that. Have you had B12 injections? Vit D3 supllements can be bought over the counter - ask your family doctor.
Best wishes
Best wishes
tracey82876 Florabunda
Posted
I will mention your suggestions to the dr when I see him next week. It is hard to get an appointment here in the bush... Thanks again. God bless.
Florabunda tracey82876
Posted
The waay forward - as I understand it. That's scary but, with my biologist hat on - the pineal gland is v small - and so is any tumour likely to be.
You need a referral to a kidney specialist soon. Because if you are going to have surgery you need to be in the best shape possible. Are you on steroids or an anti malarial for lupus. Your local doctor can prescribe these things.
So don't think the worst - but the sooner you have the test, the better the next steps. Btw you are probably getting disturbed sleep due the pineal problems. If you have a partner I'd take someone with you - someone quite forceful: it's hard feeling dreadful and trying to be your own advocate.
Let us know what happens - every good wish.
tracey82876 Florabunda
Posted
Florabunda tracey82876
Posted
Fingers all crossed. And toes. Let us know about Tuesday. All good wishes!