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

[Jillymo]

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

I recently went to see Prof McHugh in Bath but still awaiting for the full blood results.

The Prof wants me to go to 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 in Oxford for my underactive thyroid & hypoparathyroidism.

When I were last seen in clinic my calcium was very low & my Crp was once again raised showing something inflammatory is going on....... I have been telling him that for years. It is very sad we have to go down this traumatic road & trust me I have been down many......not only am I traumatised I am exhausted with it all, I am feeling so poorly.

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 showed to these consultants....I think many would be shocked at the state of me......but due to my blood results my symptoms have been ignored.......If only they looked outside of the box I might get some answer's but it seem's they have all read the same txt book and if your blood is not in the correct margin they look no further.

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 patronising consultants.........Do any of them look at the whole picture have they not heard of seronegative ? Is it that hard to see I am very unwell and in need of help ?

Photo was taken during on of my many crisis episodes.

Jillymo

[Jillymo]

I'm hoping it will go well I cant take much more of this. At the present I am waiting for the transport to ferry me to Oxford.

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

Slowly slowly deep breaths we do not want another high blood pressure reading.....calm

[jetjetjet]

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

[Jillymo in reply to jetjetjet]

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

[Suzypawz]

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

[Jillymo in reply to Suzypawz]

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. I do not know what to think any more none of them seem to look at the whole picture i'm just a part in lots of different departments.

Jillymo x

[Suzypawz in reply to Jillymo]

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

[Jillymo]

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

I am very confused.... the consultant I see on a regular basis for my hypoparathyroidism has repeatedly told me my bloods are showing I have inflammation going on & is now looking at inflammatory disease He sent blood results this week......my calcium was low and 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.

He insisted my blood results were showing no inflammation of which was rather strange.....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 margin !

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 russian roulette game. I have now 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.

Jillymo x

[Jillymo]

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........chronic fatigue is just a label so they dont have to look any further. I have been labelled with them all.

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 do not help my situation.

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 Nuffield Hospital I have no inflammation......It's no wonder we are depressed the worlds gone mad. Jillymo x

[tim47]

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

[Jillymo]

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 the way my luck goes.

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

Consultants today do not seem to confer anymore. I just seem to be going around in a circle and not getting any answer's.

I wouldn't know what Prof Paul Bowness is like at the Nuffield I didn't get to see him I saw one of his colleges but I believe he is very good.

Nice to hear from you Tim

Jillymo x

[SusanSwaan]

Hi Jillymo,

I am curieus how you are doing these days and what they have finally found

[SusanSwaan in reply to SusanSwaan]

curious

[Jillymo]

Hi Susan,

It is a long time since I put this post on - since putting it on I paid to see professor Graham Hughes privately. He diagnosed me with what he called the big three, Sjogrens / lupus, thyroid and antiphospholipid (sticky blood).

I am now attending Guys Hospital for my auto-immune diseases of which I have many. I had been antiphospholipid positive for a few years but my previous consultant had ignored it rather than treat me - I were furious when I discovered this.

Hydroxycloroquine helps with the awful flares like the one in the photo, eye drops and gels help the eyes, sprays and lozenges for the mouth.

At present I am on duel platelet therapy clopidogrel and aspirin.

Are you struggling to get answer's ? x