And yet another diagnosis!

Well having been diagnosed with sero negative RA a few years back, plus OA & needing joint replacements (both knees & foot surgery; & tendon surgery on both elbows!) I've now been diagnosed with Cushing syndrome & Agromegaly - both rare conditions. These are due to a benign tumour int he pituitary gland. Basically I am producing too much steroids which would be great if it was the kind that helped my RA but it doesn't!!! And too much growth hormones. The treatment is probably surgery.

I think the RA has been confusing the symptoms as tiredness, joint pain & muscle weakness come into it, so I've been blaming my RA when it probably isn't all due to that!

The muscle weakness is the most severe as my mobility is severely limited, I could walk further a couple of months after my knee was replaced that I can now!

Oh & yes, I've been referred to the orthopods for foot surgery as my toes are clawing under & really painful - already had the other foot done.

Went to get my vision checked & came out with another problem that may require surgery!

It never rains but pours! Still it could be a lot worse!

5 Replies

  • Oh dear Pauline, sorry to hear that things are so rough for you at the moment healthwise. I do hope that things improve for you soon. Wishing you well,

    Beverley (NRAS Helpline)

  • oh gosh, its awful once you get an autoimmune disease for you it sounds like they are like buses , all come together!

    There was a lady here recently too who might post who had the same Cushings disease as you, its obviously gonna be a bit hard to come to terms with everything you have, but i hope the docs now they have diagnosed it all can get you treated quickly. But sounds like a few op in the future, so stay brave and it sounds like you have a good sense of humour or maybe just feeling its strange all these things together.

    Good luck with everything, and let us know how you get on? x

  • Heck, Pauline, that's a lot to be thrown at you, but you sound as though you have it all in your "to do" box & sure you'll get through it as & when. You sound upbeat about it all, not sure I could be quite as positive if I was to be faced with what you have but if you've a good team & support network round you you'll get through it all.

    Let us know bit by bit when things start happening to sort you out won't you? x

  • Hi Pauline... sorry its been rough on you lately. I've had Cushings but not from a tumour, I was on steroids and after not having them for 6 mths Ive only just got rid of the hump. The diabetes and hypertension stayed so now Im insulin dependant and on meds for the high BP's.

    I do hope yours all reverts back to normal once they get rid of the tumour. Are they doing surgery, chemo or radiation or something else? Do they think you have had it since you were a child, were your bones affected? Is the eye thing from pressure on the optic nerve from the tumour?

    Just be careful depression doesnt creep in, its a symptom of cushings and considering what you have been through, its possible to get down and unmotivated without realizing it.

    I do hope things work out, you have a lot to cope with.

  • So sorry to hear this, I do hope that now the diagnosis has been made, you will get the right treatment. Good luck with this, and please let us know how it's all going. M x

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