St Thomas Lupus Trust

Lupus or Cancer

I've been suffering with an illness for just over 13 months now which has progressed to a critical stage

I initially lost 2 stone with nausea and vomiting from May 2014 to September 2014 feeling lousy and unable to eat properly

I took my partner and child away to Turkey in September at that point I was at 10st 1 from 12at 2

From the point we got back I noticed nail changes called spoon nails, changes to my skin which was really dry, slightly sworn lymph nodes on both sides of my neck, sore tongue, Vision changes such as shadows and lines and blotches in my eyesight permanent, bone pain and continued sickness with increased head pressure and ringing in my ears

I have had a ft of my brain, pancreas and chest

An mri of my small bowel, pancreas, neck and brain

A partial colonoscopy and a gastostrophy

A sehcat scan and various bloods taken such as ca19-9 and a couple of other tumour markers such as cea

My bloods have recently started to decline with low vit B, below range vit D, below range phosphate, rising calcium but still just in normal range, fluctuating thyroid to underactive then normal again

Low immunoglobulin (m) since I fell ill in May 2014 which has a strong link with malignancy, and low ceruloplasmin since May 2014

I've been to the doctors that many times and changed doctors 3 times seen various specialist they are saying it's all insignificant and I've got a fixed delusion on my health because I keep returning to my Gp

They have now got the mental health involved and that are coming to assess me for sectioning this Monday

I decided to go to see a dermatologist last night for him to have a look at my nails after the doctors kept saying it was.nothing to worry about and to just cut them and the specialist last night says I have spoon nails or koilinikia I think it's spelt like that and that it is caused by mainly iron deficiency or a chronic illness

I'm really scared. Ow because I'm dealing with a scary situation along with the added pressure of being taken from my family at a time when i need them the most baring in mind all my famil think things are ok because all the doctors are saying all th changes are insignificant

I am a 37 year old male with 4 beutiful daughters. A wonderful wife and a good job, I feel like my body is withering away and that I'm dying and ultimately going to lose everyone and everything


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