PIONEALOMA

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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.

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  • Posted

    This may help : http://www.rightdiagnosis.com/p/pinealoma/basics.htm

    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

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    • Posted

      Thank you for your help. I wasn't sure what pet scan was so I looked it up. Would that be similar to the contrast die injection when u have the MRI?  Well I am going tomorrow for the MRI , bit nervous , ...well very nervous. Now with all this stress my hair is falling out. I have alopecia ... BUGGA. 

      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.

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  • Posted

    Good luck Tracey! My brother has had bowel cancer and that often goes to the lung. The MRI scan noticed 2 'spikes' in his lung. The PET scan - I gather tells more accuratley the kind of soft tissue involved. With the PETscan they were pretty sure that although he had a tomours ( ie something ending with the word  "oma") itwas probably benign. Something like a cyst. The biopsy confirmed that.

    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.

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    • Posted

      Hay there... Had my MRI today... 25 min of normal MRI... Then 35 min with contrast... A lot longer than normal... During this the radiographer asked for my dr details... She wanted to speek with him... So this is a bit concerning but otherwise perhaps thins are progressing and perhaps I will get some answers.... Never had that happen before... So the report wil be sent for Tuesday next week... So now I have to wait until then for the actual results.    Question...???? Why would the radiographer want to speak with my dr???? In the middle of all this????? And why do they not tell my why at the time???? So very confused right now.... I have now gone over the MRI scans myself to compare old to new.... Well there are some differences in the images... But what do I know ay?????? Well suppose I just wait until Tuesday s to have the real report ay.... Trying so hard to be upbeat about this ... I always look on the brighter side of life...so that is what u will do until then... Thank you... Will keep u posted... God bless.
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  • Posted

    Glad you've had the scan. Well he/she has seen that the gland is a bit odd. It may not have changed much but the general protocol is that they give the info to the Dr who requested the test. Generally this is because the GP knows the case history and is better placed to give advice than they are. For example, if surgery is needed, the GP knows about any other health conditions that may affect thing before surgery eg meds.

    Fingers all crossed. And toes. Let us know about Tuesday. All good wishes!

     

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