The ball is rolling...

Just a quickie.  Looks like the ball is finally rolling which is exciting.  I will be going to the hospital tomorrow for allergy tests and then again first thing on Monday for a CT scan of my sinuses.  We were quite surprised to only get a letter about that today, but the sooner I have that done the sooner I can get on the waiting list for the surgery so it's good really.  It will be interesting to see what it shows.  Fortunately my dad will be able to be there to help push me around in the wheelchair too, so that's good.

All that activity will probably wipe me out for a while though so it'll probably be another week 'til I can use the computer again.  At least it's for a good cause. :)

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!

A good week and a decent doctor

This week has been going so much better than last week!  I am so grateful!  Last week I spent pretty much every minute of every day in bed resting in silence just to be able to go to the bathroom and eat the meals my mum made.  It seemed that my condition had finally stabilised... but at a really low level.  Fortunately that is not the case!  

This week I am feeling a lot better am able to walk to the loo or kitchen just fine when needed.  I have even been able to listen to 30mins to an hour of a talking book most days or spend a  

little time on the net with my laptop looking at funny things like lolcats.  It's always good to find things that make you smile.  I am still resting in silence for about 10 hours a day of course and having to use the plastic cutlery etc. but now I can spend time listening to the birds, watching the clouds change as they drift past outside my window, and seeing the new blossom on the prunus tree bobbing around in the breeze.  I think it's so important to take pleasure in little things.  I always loved to draw when I was a child but I was academically inclined and went into the sciences.  Somehow I never really had time for art anymore so now I'm looking forward to the point where I am well enough to sit and sketch or perhaps even try my hand at painting.  

My doctors appointment at the beginning of the week went well.   My new doctor has his head screwed on right and had some helpful suggestions - this is a relief after the last one was so rubbish!  I now have a referral to see an ENT for my sinusitis as well as a couple of weeks of antibiotics to see if they clear up the current infection.  Apparently the ENT can actually flush out my sinuses, something which can really help clear up chronic infections it seems.  I've wished many times over the last 2 years that I could rinse out my sinuses and not just my nose, so I'm really looking forward to hearing what the specialist says.   As I think my sinus problem was initially caused by sieving volcanic ash for a prolonged period without a dust mask (yeah, not very sensible I know!), perhaps it could really help.  I am still waiting to see the ME/CFS specialist to get a definitive diagnosis, hopefully that will be also be in April.

P.S. The photos are from Oregon in the spring last year...