Barts & Addenbrookes (Cambridge)

[Paul Clarke]

Hi Vicky-Louise,

From my experiance of various fidderent fora, talking to people in the same boat as you and being in a similar boat myself, for what it is worth, my strong advice to you is NEVER GIVE UP. You may have a long fight in front of you and you may encounter unforseen hurdles but remember this, there is not one person in our community that doubts that you are ill for a second. Most people ytavel a long road to get to a diagnosis (average from 1st presentation to treated diagnosis - 6 years 3 months), just like you are always ready and willing to support others, others are ready and willing to support you.

I wish I could offer some sort of short cut to your health but it is not just your illness you must fight, it is medical politics, lack of knowledge and caring, the nature of your illness which tkes the fight out of you, the guilt, the unreliability and everything else that goes along with it.

You are not alone. Don't give up fighting. You are still only a few pills or perhaps a surgical procedure awy from having a normal life.. It is an attainable goal.

Regards,

Paul

[JohnwithanhD]

OK, a smaller hospital might not have an endocrine nurse. (Reading did though; that's basically a diabetes centre too.)

Perhaps when there's some sort of response from the people your endocrinologist talked to in London, you may end up as part of their system. Let's hope so, for your sake.

Can you get your CFS consultant to chase up the endo, or at least advise on the best way of going about it? Or your GP?

I would say your best chance is to get to see someone at Barts, Cambridge or some other substantial centre. Not that they would be able to give you an answer straight away either, but at least they would have a good chance of knowing what battery of tests to throw at you.

I do feel bad for you, Vicky-Louise, as it can be very frustrating both not knowing what is wrong and not knowing when (or if) you are going to find anything out.

John

[Vlal]

Thanks for the replies and support. Sorry you caught me in not the best of moods, but I guess that's life and this board reflects it!!

I think you are right Paul, sometimes I need to be reminded how close a change in my life could be - as in if they can work out what is wrong and treat it, I might feel like a new woman! It's hard to see the wood for the trees at times... most of them time I am fairly optimistic, but then there are those moments of despair when everything just seems to be going against you.

John - Unfortunately the CFS consultant discharged me as soon as she suspected Pit problems. I think my best bet would perhaps be a GP. I may go back to my local surgery and try my old GP (a male one who has dealt with me since I was little and all through my initial diagnosis of M.E.) and tell him what is happening and see if he can suggest a next step. I think I need to ummmm take a while to get myself together mentally and energy wise before I do that!

[JohnwithanhD]

Vicky-Louise,

GPs are usually a good place to start as they know the politics involved. Any chance you could get a telephone consultation with him to save dragging yourself out? My GP's surgery seems to like those as it saves them time too. Maybe pick a day when you are feeling relatively good and ring to see if he can call back?

The wheels of action may well be churning away somewhere (you never know) -- but after a month or so you should at least be able to get an idea of what the next step should be.

BTW I have given up ever believing that an outpatient appointment at my hospital will ever be at the time I am first sent -- I haven't yet had one that hasn't been rescheduled at least once! (Tests, day curves etc are another matter as the nurses seem on top of their calendars.)

John