Sticky Blood-Hughes Syndrome Support

Round and round

Well I met up with my Rheumatologist on Thursday, informing him that I had followed his advice and come off Methotrexate and since doing so felt terrible. He has now put me back on it with a full set of bloods looking for the Scarlet Pimpernel in my body of inflammation. On the bloods ticket he mentions PSA Psoriatic Arthritis so. Back on the Roundabout after 12 years of investigating.

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Hi Les

Sorry to hear that you still have uncertainty about what is going on. I can sympathise 100%. I was told I had PSA and then that I didnt and now the consultant talks as if I do! I would have been as well to have gone to the local garage and asked them what they thought and avoided the medical profession entirely. At least low dose aspirin (provided for supected APS) seems to be helping.

12 years of the roundabout for you is pretty scandalous. No one person takes responsibility for/ ownership of a patient and diagnosing his/her condition and so we get sent back and fourth bertween specialists with little coordinatioon between them and GPs failing to recognise that it is tyheir job to coordinate and drive the process to a rapid conclusion i.e. correct diagnosis and effective treatment.

Hope things go well for you Les and that the weather here cheers up soon.

cheers

R

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Thanks, I hope you are still progressing. We shall have to meet for a coffee sometime.

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Coffee would be great Les. Have put in offer on flat in Swansea (as West wales feels like it has been my nemisis) but will be here for awhile. Will give you a ring if thats OK.

cheers

R

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Ok no problem

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Why did he take you off MTX when it has a good response to your symptoms?

I am so very sorry you are feeling so poorly.

With good wishes,

Ros

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Thanks, I think APnotFab's comment sums it up. I have a doctor who is trying.

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Unfortunately when you get one autoimmune disease others like to pop along to join in the party. Whilst they are in the process of really showing themselves it can make dx difficult. At least you have a Dr who is prepared to keep looking! Hope things improve soon.

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Thank you I agree my Dr has been great, I just hope he is not moved, as Rheumatology here in the South West of Wales is beyond poor.

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A lot of us have a mixture of diseases, they seem to trot along in pursuit of the ones we already have! Please do make sure they regularly test your Thyroid, B12, D and Iron, as these basic tests can indicate things, if your levels are low!!! MaryF

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Thank you for you suggestions I will continue to pester them

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