Saturday, 4 April 2009

A visit with a "specialist"...

One of the helpful suggestions made by my new doctor last week was to call up the CFS clinic at the hospital to let them know we could come at a moments notice if they had a cancellation. Much to my delight they called up and made an appointment for Friday!  "Fantastic" thought I, "I will finally be able to see a specialist and get the appropriate tests done."  As so often is the case, it wasn't at all what I was expecting...

It turns out that the CFS clinic doesn't actually have a general doctor on staff let alone a specialist!  It is just 'occupational health' people who are there to give you some tips on how to cope with the condition and accept it.  Now don't get me wrong, this is great for people who have a definitive diagnosis and only need disease management techniques, but I do not.  

She tried to tell me that the doctor had done all the blood tests necessary for a diagnosis which I thought was, quite frankly, laughable.  They have done the basic bloods to check liver, kidney function etc. and rule out things like glandular fever, anaemia, diabetes, leukemia etc.  There are however so many other possible causes of chronic fatigue that are not included in these tests that you have to wonder how many people there are out there with undiagnosed autoimmune diseases, cancers, multiple sclerosis, lyme, chlamydia pneumonia, active viruses like parvo etc., even TB or AIDS.  Even my doctor has implied that more tests need to be done before a diagnosis can be made!  In order to make sure they are the right tests he wanted the specialist to do them...  

It seems to me that when working with a public health service like the NHS you really have to advocate your case for further tests and a proper diagnosis because of course they would prefer you didn't - it costs them money.   That's why there are people like the occupational health person I saw, they are there to protect the specialists from being swamped.  

So the conclusion of my visit, because I pushed for it, is that I will be getting a referral to an MS specialist who has also worked with ME patients, and that this new doctor will be able to run the appropriate tests.  

I did learn a couple of interesting things during the meeting though:
1.  Apparently only a small subset of CFS sufferers have the acute intolerances (to food and airborne chemicals or particles) that I have.
2. Most CFS sufferers have a low cortisol (adrenal fatigue) whereas I have high cortisol levels and have been taking stuff to lower them for the last 6 months or so.  The naturopath who discovered this said that my body was producing extra cortisol to reduce the symptoms of a chronic background infection by suppressing my immune system.   By lowering the cortisol levels my neutrophil count went up and my flu-like symptoms got notably worse.
3.  Most CFS sufferers have unrefreshing sleep even if they do sleep through the night whereas, although I had some sleep problems initially, I now sleep well (7-8hours) and I always feel better in the morning and decline throughout the day.

Incidently, this meeting cost me a lot... I went in walking but had to be wheeled out and manhandled into the car because I did not have the muscle strength to stand even with help.  Glutamine supplementation is helping my recovery but I am still exceedingly tired and getting a fair frequency of nerve pains...  

All in all I am very pleased that I got this appointment at least a month earlier than I would have, otherwise I would have been quite frustrated by it.  As it is, it was useful, just not immediately so.   Let's hope the visit to the ENT (rescheduled for the 14th) goes better!


  1. Sorry to hear your appointment at the CFS center didn't go quite as you'd planned. You're right that you have some characteristics that are unusual for CFS/ME, although most experts now agree there are different sub-types. I think you're on the right track to continue looking for answers.

    I took your advice and got some L-glutamine. I wondered how many grams you take each day? And does it upset your stomach? I've started out with 1 g per day, and I've already noticed some stomach problems. Not surprising - since CFS, everything upsets my stomach! I can't even take most vitamin supplements because it makes my stomach problems worse.

    I do think it's helping a little, though it's hard to tell because I've been going through an unusually bad period for me.

    Just curious what your experiences have been with it so far.


  2. I'm in the UK too and got so frustrated with the 'there's nothing wrong with you it must be depression' approach I eventually paid to see a consultant privately. Best £200 I ever spent.

    It seems to be a feature of CFS that it is idiosynchratic and throws up all sorts of symptoms people can't explain and that are pertinent to you and you alone. I read somewhere doctors only think organically when it comes to diagnosing disease. CFS is a functional disease. Trying to find an organic cause is a bit like looking for your lost keys outside the house because the light is better out there.

    I remember where that came from (small miracle), Dr Nick Read - Sick and Tired.

    The stress of these hospital visits takes such a toll doesn't it? I hope it's all settling down again and the crash passes fairly quickly. All the best. . . .

  3. Gosh that's awful that the health system let you down so badly Jo! I'm glad you got the answers and advice you needed in the end, even if it did cost you. I'm lucky that the ENT I just saw was the only doctor to dismiss my fatigue as 'lethargy' (grrrrr...)- so glad he wasn't my primary doc!