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  • Mrs Chakotay 5:49 pm on March 13, 2017 Permalink | Reply
    Tags: adrenal, , , , endocrine, , , , , , , MyE, , , ,   

    They’re Civilians! Civilians with Partical Weapons! 

    Apologies for the rather long hiatus in posting. Life as a full time (mental health) carer has been very taxing indeed, and I have found that my life and ‘free’ time has no longer been my own and, when I have had free time, I have been too exhausted to use it productively.

    There have been lots of things going on, and there are lots of things I could post about but I will have to think about what and how much to share, why I’m writing in the first place and who my audience might be.

    Since the Autumn I have also been battling with the NHS system to get to the bottom of my health issues. I now have an official Consultant-led confirmation of the diagnosis of ME, although disappointingly that doesn’t seem to help much – the general gist of things is that they can’t really do anything very much to help me. But I have seen a neurologist and will be referred back to the Pain Clinic apart from other things.

    Additionally, my GP has been looking for evidence of Cushing’s Disease. It is considered a ‘rare’ disease, but it is on the list of endocrine disorders that should be ruled out before diagnosing either Fibromyalgia or ME as well as Adrenal Fatigue/ Exhaustion. It’s actually in a way rather the opposite of Adrenal Exhaustion since AE is a lack of adrenal hormones (the adrenals are exhausted) whereas Cushing’s is an excess of adrenal hormones – in particular, cortisol, which may be caused either by overuse of steroid medicines or the presence of a pituitary or adrenal tumour.

    After various stages of testing, I have an appointment for a kidney scan (primarily to find out why my blood pressure is so enormously high and resistant to meds), and I’m waiting for the results of a new MRI. My GP said that, even though my cortisol levels appear normal so far, if there is no mass on my kidneys she will order an adrenal scan as there is obviously something not quite right. So no results yet but I feel as though I’m making (slow) progress at last thanks to my lovely GP who is the first to take me seriously and keep on testing until we find the truth.

    That’s all for now. I do plan to come back to blogging. If you’re reading, please let me know. If it’s only for me I may still post as I find it therapeutic. Talking of therapy, my therapy of choice is still Star Trek. Top marks to any Trekkie who is able to identify the episode – I’ll give you a clue, it’s from Star Trek Voyager – from which the title of this post is named. (I used it as I’m in the middle of an upsetting episode in real life, that has me confused and questioning everything I thought I knew, but that is for another day.)

    LLAP

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  • Mrs Chakotay 10:17 am on May 16, 2014 Permalink | Reply
    Tags: adrenal, , , , , , ,   

    ME: An Alternative View 

    The following website belongs to a friend of mine, who has an alternative and controversial view on what ME really is:

    http://aboutmy.me/

    I think that in my case, this probably applies, and I am working on the basis that thyroid and adrenal issues have not been adequately or thoroughly investigated by my doctors.

    But I think that the thyroid and adrenal connection is only one part of the puzzle – it doesn’t fit the profiles of the outbreaks of mass ME such as the Royal Free case, in which dozens of patients and nurses came down with the same illness.

    But it is definitely an issue that must be properly investigated before ME can be legitimately diagnosed.

     
    • Emma Louise 7:23 am on May 19, 2014 Permalink | Reply

      Hello,

      I am a student journalist from the UK, currently studying at University of Technology Sydney. I also suffer from CFS.

      I am writing a colour story/feature on recent scientific discoveries linked to CFS such as the study (April 2014) where evidence was found that CFS sufferers have neuroinflamation.

      I have experienced the stigmatism attached to CFS so I am writing this story to discover what it means to people with CFS and the positive affects scientific evidence can have. I am also interested in those involved in the research and raising awareness process to hear their opinion on the fact that there is now scientific evidence linked to CFS.

      I wondered if I would be able to speak to you for my story?

      Kind Regards,

      Emma Louise

      Like

    • Hannah Jade 11:54 am on July 7, 2014 Permalink | Reply

      It Defiantly was an alternative view (Claiming CFS doesn’t exist).

      The process for being diagnosed for CFS is to have countless number of blood tests done and for GP and specialists to check them, before you are even sent to a specialist (Well that is the case in Bristol any way). Whilst it appears your friend had a misdiagnosis it does not mean the condition is not real, and I think calling it a myth is quite offensive and simply incorrect.

      I think one of the most important things is to get a knowledgeable, compassionate and supportive GP (Regardless of what you are suffering from), who will listen to you and preform more tests if you don’t feel a proper diagnosis has been given. My advise to anyone is to find a good GP if you don’t feel like yours is taking you seriously or try a different one in the surgery or even switch surgery all together.

      Whilst I think everyone is entitled to there own opinion, I think it needs to be said that CFS is a real condition (Even if it wasn’t what your friend suffered from) and through effective treatment (Nutrition, CBT, Counselling, GET and general life pacing) people do get better.

      Like

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