I just hope they can find out whats wrong

queenfan

Sorry to everyone for not being around lately but it's been draining being pushed from one person to another, to cut a long story short I have had two fasting blood tests a few months ago which came back with very high iron counts over 700 so firstly I was sent to rheumatologist because they thought it was due to my condition, I saw the rheumy very ignorant man :x never made eye contact told me this had got nothing to do with him, was then sent to blood specialist he told me it was because of the arthritis :roll: had another blood test came back higher than last two was then sent for liver scan found out it was damaging my liver, I was sent to see liver specialist, I took the earliest appointment which was at a hospital out of my area (which I didn't mind) that was yesterday, where I was told the rheumy hadn't forwarded my scan results, lovely specialist thou He told me he was going to get to the bottom of what is wrong with me So he started me off with lots of blood tests which he apologized for bless him, I had two large gene samples taken plus 10 more bottles :shock: We had a good laugh thou because my veins only have to smell a needle & they run and hide he is testing for Haemochromatosis if it is that my veins will have to get used to being found love to all xx

lindalegs

Dear Sue have you any blood left after all they've taken??? :shock: Just in case they do need more you'd better start eating raw liver now!!! Just kidding, you can cook it first

I really hope they get to the bottom of it all and get you feeling better than you do.

Take care.

Love,

DebbieT

Blimey, how stressful!!

I hope they get to the bottom of it with all of the bloods they've taken.

Take care (((((hugs))))) xxx

stickywicket

I hope they get it sussed out quickly, queenfan. Please keep us informed.

queenfan

Thank you all for your lovely comments I will keep you all up to date I feel that I don't deserve your support when I've not been on here for such a long time so thank you

[Deleted User]

queenfan wrote:

Thank you all for your lovely comments I will keep you all up to date I feel that I don't deserve your support when I've not been on here for such a long time so thank you

Oh? We are supposed to squat on the forum permantly to deserve support?

Anyway- that is my main critic concerning the health system as I know it. You are sent to one specialist and he has a more or less thourough look at HIS side of a presumed problem. Then you are sent to another one when the first says : earlobes are ok, could be one of the fingernails. I simply miss a more global check-out where all the specialists are in direct contact. A more holistic way to look at your body. We know that certain diseases of the digestive system may be triggered by a tooth problem, for example. I don't know if I make myself understood here, but in my case it would be the relation in between AS and strokes. They never even thought about consulting a rheumy. There is no real dialogue in between the docs. Everybody is fiddling at his end, without checking out the possible other.

dreamdaisy

You make a good point there, Caliban. We need specialists but better communication between them would be of great benefit.

Hello Queenfan, long time no hear and no wonder. I am so sorry to read that you are no nearer finding out what is going on and it must be so frustrating to be moved from pillar-to-post. I empathise because I've went through something similar when I was trying to find out what was wrong with me (no comments from you about that, young Caliban ). I hope someone will be able to help you sooner rather than later. Please keep in touch to let us know, OK? DD

[Deleted User]

No comments on that from "young" Caliban then. Pffh
In a way I'm very lucky with my HLA-B27 thing. Not only I'm never really alone with it (him or her?) but that helped enormously with the SA diagnosis. A shame you can't have one of those. But I was told that there is something like a general examination where a number of different specialists will be involved to check out your entire health history. They do it in hospital, according to our national arthritis organization. But not every gp is willing to send you there.

dreamdaisy

One of our forum members was sent to see a generalist, Caliban, I wonder if that is the kind of thing you are meaning?

It's another (and good) thought, queenfan, but I guess you must be fed up with seeing so many people. Why bring in another one? DD

queenfan

Caliban you have hit the nail on the head, life would be so easy if people spoke to each other(would save hours) But they don't like to make things easy, that's probably why there are so many mistakes.
I will keep you up to date sticky - DD I was putting all this drowsy feeling down to my meds but like hubby says I have been on them for a few year so it wouldn't be them, I felt so ashamed of myself feeling this tired all the time, I've been living in limbo for months & months not knowing what the problem was, alright I don't know the final diagnosis but at least they are trying to find out take care everyone & thank you for your replies

DebbieT

Im wondering if you mean something like a Multi Disciplinary Team Meeting?

I only know of them in relation to a couple of things ... The first time was my brain cyst, the Neurologist wanted a more in depth analysis of the MRI & opinions etc so she said she'd be attending such a meeting. The 2nd time was in relation to my Dad ... They'd biopsied his lung & had the pathology report but again they wanted input from more departments such as oncology, pathology, radiology etc so attended a multi disciplinary team meeting.

I'd imagine something similar makes far too much sense to be applied to us?

xxx

Starburst

Will keep my fingers crossed for you, queen and you're a member of this forum, so you're always welcome to any support that can be found. That's the great thing about this forum, no matter how little or often you are here, the support stays the same.

My rheumatology team has multi-disciplinary team meetings every week - rheumatologists, rheumatology nurses, specialist physiotherapist and specialist OT. Yet, believe it or not, it took 3 weeks for the specialist physio to get a message across to the rheumy! It seems that even in the same department, they don't always answer their emails or answer a note left on their desk. Busy people, I guess...?

frogmorton

Hi Sue!!!

Lovely to see you

I am glad the blood doc seems to be determined to get to the bottom of the problem despite the lack of help from rheumatology anyway :roll:

Please do do let us know the outcome

Love and ((()))

Toni xxx

dreamdaisy

I too am struggling with tiredness. It's a s*d, isn't it? I yawn from the moment of 'waking up' to going to bed (having not been fully awake all day long). I keep the dullers to a minimum but even I realise that the meds cannot be the source. Investigations are under way which has to be a good thing. :?

We're here, end of. Please keep in touch. DD

queenfan

I will keep in touch with an up date If I could just be told what it is that is causing all this that would be something, so like we all say fingers cross