Off to the Nufield Hospital today in Oxford to see Prof Paul Bowness

I am praying luck is on my side & I see a consultant that actually consults ....whats more one that knows about autoimmune infalammatorry diseases.

i recently went to see Prof McHugh in Bath but still awaiting for full blood results.....suspect Sjogrens.

This consultant wants me to go to residential coping skills.....what I wont to know is what the hell I am coping with....a diagnosis would be nice.......this is before he has got my results.

I am under an endocrine clinic for my uderactive thyroid & genetic Hypoparathyroidism, I was seen in clinic on the 2nd july Tuesday .this week.

I was amazed my consult that constantly drags his heels & my putting a rocket where the sun dont shine managed to get my bloods back the very next day !!!!!! (result shows it can be done )

My calcium is once again very low & my Crp yet again raised. showing something inflammatory is going on.......Ha I have been telling him that for years.

It is so sad we have to go down this traumatic road & trust me I have been down many......

not only am I traumatized I am exhausted with it all.

I cant even cry anymore my emotions are so screwed up....I'm living a life of pure hell......

i wish I could put the photo's on site that i am showing these consultants....I think many would be shocked at the state of me......but due to my bloods not showing up results my symptoms have been ignored.

I cant take any more so praying this one I am seeing today can shed some light at the end of this long dark tunnel.....i have had enough of sitting in consulting rooms with patronizing consultants that do not know there job yet reap in huge wage packets.

Jillymo

11 Replies

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  • Good Luck Jilly! Everything crossed for you. xx

  • With regard to my appointment In Oxford...... I did not see Prof Paul Bowness but one of his clinicians I must add he was a very nice young chap.

    Aps I am very confused.... my consultant I see on a regular basis for my hypoparathyroidism in endocrine has repeatedly told me my bloods are showing I have inflammation going on & is now looking at infalmmatory disease.

    Infact it was only yesterday (thurs) he sent my blood results that he did on Tuesday this week......my calcium was low my CRP was once again slightly on the high side.

    In fact it has been high for a few appointments now.

    The young consultant today immediately homed in on my osteo arthritis, fibro myalgia & was questioning sjogrens.

    But insisted my blood results were showing no inflammation.....i told him of my recent results that had been emailed to me by my endocrinologist but he still insisted my levels were in the correct margine.

    I am aware that some hospitals have different margins but these two hospitals in Oxford are side by side to one another......I now feel my diagnosis it a bit like russion

    roulette game & have completely lost confidence in the NHS.

    My endocrine works in the pathlab but when I mentioned this to the consultant I saw today all I got was a raised eye brow.

    It will be interesting to see what results come back from Bath to compare with Oxford

    I feel like I am living a nightmare the only good thing that came out of today is he is going to ask my doctor to prescribe that gel you spoke of for the dry mouth & something to help with the fibro myalgia.

    Sorry it's a long email Aps & its your ears or eyes in this case i'm bashing but I need advice. Jillymo x

  • Thanks Aps I,m hoping it will go well i cant take much more of this, i'm awaiting for the transport to ferry me to Oxford.

    It's enough to give you a panic attack waiting for them after the visit to Bath & the driver getting lost.

    Slowly slowly deep breaths.....calm :-)

  • best of luck , out to you - 10 deep breaths and knowing we are thinking of you will help -let us know how things pan out ... be waiting for the positive up date ------------------ jet

  • Bless you Jet, with your own troubles you still found time to think of me.

    I cant say it's a positive update more of a confused one......please read my mailing to Aps.

    I hope your feeling a bit better now, Jillymo x

  • Good luck, sounds like your now going down the right path & seeing somebody that may know what theyre talking about this time, all the best :-)

  • Thanx Suzie but i'm beginning to think none of them know what they are talking about as they all tell you something different.....my head is spinning with it.

    Read my reply to Aps because I dont know what to think any more.

    Enjoy the weekend

    Jillymo x

  • See what you mean....very confusing, don't know why different hospitals are being so different either?? you need to be seen again by the sounds of things & have it looked over again & explained better?!

    I hope you get the answers you need soon x

  • Hi Suzy,

    Your my kind of girl with your love of animals but I have got to ask what is a degus ?

    It brought a tear to my eye when you said you have a cat called Saylem my cat was called the same ! He was a lovely animal with a beautiful black coat but I lost him in March due to an enlarged heart. :-(

    It seems you have also had a bit of a run around to get diagnosed......& yes I have had the depressed thing it really is a poor show when your feeling so awful & desperate.

    I have got to the point I dont know where to turn, when I see my Gp it's like a battle with Hitler.....& now these conflicting blood results.

    I find it unbelievable that if i go to the Churchill hospital in Oxford I have inflammation in my blood but if I cross the road to the Nufield Hospital I am clear of Inflammation......It's no wonder we are depressed......the worlds gone mad. Jillymo x

  • Dear Jillymo,

    just picking up on the dry mouth thing,I have had the same problem (and I'm going to see a dental surgeon/doctor in Guys who specialises in Sjogrens and dry mouth).

    In the meantime I often use biotene products. There is a gel, a moisturising mouth wash and a toothpaste. They can sometime be difficult to get hold of and though you should be able to get them on script, I bought my last lot in quantity online from weldricks.co.uk/ ( I see they are short of the toothpaste at present) Using all three in combination has had the greatest benefit,

    I hope that your people start talking to one another soon. I'm watching as I was thinking of Bath or Oxford for myself as I'm no longer on St T's books. Oddly, I was under a marvelous man at Oxford until we moved to the West Country just over ten years ago, he used to collate everything for me and I was with him for well over twenty years. Sadly he is retired now.

    Best of luck

  • Hello Tim,

    I have heard of the biotene range but as yet to try them, the consultant in Bath has prescribed a gel for me to try.....Iv'e had a mouth spray up until now but i cant say it is helping.

    Your not the first to mention this wonderful consultant in Oxford now retired, that is just the way my luck goes.

    I started at St Thomas many years ago before my diagnosis of Hypoparathyroidism & Fibro Myalgia.

    Consultants today dont seem to confer anymore, i just seem to be going around in a circle..

    I dont know what this Prof Paul Bowness is like at the Nufield as i didn't get to see him.

    Nice to hear from you Tim

    Jillymo x

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