Friday, 11 October 2013

Gastroenterology referral

Have been really, really struggling today. Apologies to those of you who have had to deal with my moans and tears, you've all been amazing <3

I saw my doctor first thing this morning after desperately trying to get an appointment for the last 3 days.

I explained that my nausea simply isn't bearable, and from what I understand, it's most likely to be caused by 1 of 2 things:
1) my CFS directly affecting the balance or emesis centres in the brain
2) gastroparesis- delayed emptying of the stomach, which is more common in CFS sufferers

I said that I thought it made sense to test for gastroparesis given that it's possible, but said I wasn't sure how easy it was to get a gastric emptying study. My doctor said it wasn't something he'd be able to directly instigate, so he would refer me to gastroenterology, but would get in touch with my main consultant first to make sure he was kept in the loop (by urgent fax, so hopefully shouldn't delay the referral much).

This has really upset me for 2 reasons: 1) It's another department, another doctor, probably more testing etc. and 2) The referral is going to take 3-4 weeks- the nausea is *unbearable*.

I don't know how I'm meant to cope for another 4 weeks with nausea this severe. I feel like I've been abandoned to deal with it until I see the gastro specialist and I don't know how I'm meant to manage until then. I've had nausea for 4 years, but it's never been like this. Even when I do finally get to see the specialist, the likelihood they'll immediately put me on something that works is very slim. It makes me want to just march into A&E and get myself admitted. I'm sure they would- more because of my weight than because they would understand the severity of my nausea. But I don't want to be in hospital, I just want some treatment. I just want this oppressive nausea to stop.

I'm already under immunology, the CFS service, dietetics and maxfax. I have been discharged from 2 other services/departments within the last year. I'm possibly also being referred to ophthalmology at the moment (although I don't see why, so hopefully not) in addition to this latest referral. I'm sick of hospitals.

But then maybe it's a good thing. I need my nausea sorting out, and they're the most likely people to be able to help, and they may be able to explain/do something about my severe abdominal pains too, which would be fantastic- particularly if I could get off tramadol, which I'd really rather not be on. So there are positives, the negatives just seem far more obvious today. I think it's the 'straw that broke the camels back', I think I'm exhausted and have gradually been dealing with more and more and this last thing was just too much. Hopefully the next 4 weeks will absolutely fly by, or the nausea will get easier to deal with...

1 comment:

  1. We need your help

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    Please order HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS

    On September 23, thirty-five of the leading ME/CFS researchers and clinicians wrote to HHS Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition. On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.

    Regarding the IOM contract, the thirty-five experts stated, “Since the expert ME/CFS scientific and medical community had developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on the disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.

    The use of on-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-23 billion dollars in lost productivity and direct medical costs.

    Given the overwhelming opposition to HHS' plans by both patients and experts, I am asking you to do whatever you can to get HHS to follow the lead of ME/CFS disease experts. HHS must cancel the contract with IOM. HHS must adopt the Canadian Consensus Criteria.

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