Feeling Like a Fraud

[adrian_holland]

Sorry, it's been a while, but I have had other stuff to keep me occupied. To bring my story up to date, I was discharged by Rheumy at Chaple Allerton in December last year as my blood results were enough to convince them that I do not have Lupus, although they recognize that my symptoms seem to be systemic and troublesome. they suggested a referral to Immunology, as they concur that my problems are not Gastro, even though some of my symptoms are, it is their conviction that I could have a tropical disease that is effecting my immune system. I was referred there by my GP in January and am still waiting!

In the meantime I have been diagnosed with Glaucoma and my eyesight is deteriorating dramatically. And I have continued with my physiotherapist who has been great, and indeed has just referred me back to Rheumy, at the local hospital because the physical condition of my joints which are producing physical evidence of drastic and rapid deterioration does not correspond with my bloods which indicate no inflammatory markers, she is convinced that the accumulation of symptoms that she is witnessing must be related and must have a common cause. The Dermatologist, however, I was much less impressed by. She was very dismissive and doubting about the light sensitive rash (lets see what she has to say this time, as since the sun has come out I am beginning to look like an alligator again>, and even doubted that the Hydradenitis that was diagnosed some 15 years ago, was even that.

To add another complication to my already strained bow, my orientation and balance problems of last year have progressed and are now causing me to fall so this morning my GP has referred me to Neurology.

It's already been a long journey, God only knows where it ends...... but onward and upward as they say!!

[EOLHPC LUPUS SUPPORT Volunteer]

Hello Adrian: am glad you've updated us.

Nothing really v easy &/or straight forward about this diagnosis & treatment process, is there....am relieved your physio is supportive!

It seems to me the fact both rheumatology & your GP are proceeding with this referral to immunology is proof you're no fraud: my understanding is that nobody gets referred to immunology without good reason, despite various respected lupus experts thinking all lupus patients should attend immunology clinic. am looking forward to hearing how you get on during your immunological investigation...my impression is that immunology can be key to constructing effective treatment plans based on individualised diagnosis for complex cases

The head rheumatologist at my lupus clinic referred me to immunology in feb when hypogammaglobulinaemia turned up in blood tests prior to starting in osteoporosis treatment. My first immunology appt is mid may...at the mo, am trying to get my head around how to present...so far rheumatology haven't discharged me though

so, knowing you're involved with immunology too helps me to feel more positive

Take care, keep your chin up

[lupus-support1 Administrator]

I am very sorry to read your latest news which is both distressing to you and unhelpful in terms of someone taking control, determined to find out what is wrong.

I do not know where you live - whether the UK or US or elsewhere. If you are in the UK, I recommend you get a GP referral to see Dr David D'Cruz at St Thomas' Hospital, London. If you have private cover, I recommend Dr Graham RV Hughes (who has taught almost every lupus specialist in the UK) at the London Bridge Hospital's Lupus Centre. Most of the doctors, including Dr D'Cruz are also there and they work and discuss patients together. Thus, you could see Dr Hughes for one appointment and continue at the NHS under Dr D'Cruz.

It is simply not in your best interest to be told to go and see numerous specialists who are unaware of the whole "you" or who are only interested in one "bit" of you. It seems logical to assume these symptoms, albeit diverse, are connected and therefore you need someone like Dr Hughes.

Finally, why do you feel a fraud? Perhaps you are saying that you are made to feel like a fraud because a doctor, like your dermatologist, does not know and can blame the patient for not knowing. Since she did not see you 15 years ago, she is in no position to criticise another dermatologist without evidence that she is right. Her comments make her feel better, but has left you feeling a fraud!

With good wishes,

Ros