sorry I haven't posted again in such a long time. 2010 has been a hellish year and to tell you the truth will be very glad to see the back of it, hoping and praying that 2011 will be considerably better and I may actually get somewhere, anywhere but here!
So whats been happening, well I seemed to have developed gastroparesis - a neurological disorder that literally means paralysed stomach. I have been waiting since September 7th to see the gastro team at the local hospital for an urgent referral. This came after I vomited blood on September 5th. Not a lot but enough to scare me particularly as it was the first time I had vomited that day.
The stomach problems are going through a good phase. I am still having a swollen abdomen which on occasion makes me look 9 months pregnant and the odd day of pain. The constant 24/7 nausea has eased I only have a few bouts a couple of days a week. But that is the nature of the beast, it comes and goes. I am still taking tramadol however I did just do three weeks without it and I haven't taken morphine for about a month.
My GP is being a complete twit though, he doesn't listen or should I say he doesn't hear. He is refusing to give me morphine, so what little supply I have left I am conserving as if I get really bad I will have to go to hospital for pain relief. As you know I hate hospitals, so if it gets bad I go to bed take what painkillers I have and wait for it to pass. My GP believes that my nausea and stomach pain are being caused by the opiates, however I developed these symptoms when I wasn't taking them. Ive had a lot of opiates, nausea is not one of the side effects I experience. I actually get aggressive and agitated when on heavy doses of morphine, ask my husband I punched him when I was in hospital on a morphine drip. His crime he kept tapping the bed with his foot, when I had just had major abdominal surgery, any movement caused extreme pain. I did ask nicely for him to stop before I launched into the physical assault!
The GP that referred me to the gastro team wasn't my usual GP and actually seemed quite switched on. Unfortunately if he stays at that practice it will be beaten out of him. Plus he never followed up on me, again another case of out of sight out of mind. He did actually suggest that I needed a muscle biopsy and had anyone ever tested me for a mitochondrial disorder. The answer is NO and it wont happen if you don't follow it up as my GP seems to think that my health problems are generated by a mental health issue. What mental health issue I don't know as hes never bothered to expand on that.
My adhesions are playing up and certain movements provoke a tugging sensation and then spasms of pain. On the whole I have had a relatively good month so I don't want this post to be seen as whinging. Because it isn't.
In November I ran the gauntlet of the CFS/ME clinic. I was actually supposed to be referred for autonomic testing - but my GP cleverly referred me to the same guy wrong clinic as he believes I have ME - with ptosis that responds to mestinon. The appointment was supposed to be 90 mins, we were kicked out after 45. I don't have ME, and that service can't help me.
The appointment was weird for the first ten minutes the guy went through my notes - surely this would have been more productive to go through these before my appointment and have some questions prepared for me? He also called me the wrong name Anita, who's Anita? Plus all my correspondence from the NHS is addressed to Ms, not Mrs. Ive been married ten years and despite changing my surname and informing them I am married they continually perpetuate this error. I know its a small thing but if they can't get the basics right what hope is there?
We talked very little about my symptoms, this guy thought he was a shrink. He wanted to know how many sexual partners I had, what my relationship was like with my parents and sibling, had I been bullied at school, what eduction I had (he was a bit taken back when I told him I had a degree). He was looking for something to pin my health problems on, fortunately for me he found nothing. I scored 3 on the depression scale (0-7 is normal) and 7 on the anxiety scale (0-7 normal). I admit I am a naturally anxious person I always have been. If I don't have something to worry about I will make something up. But I have learnt to control it and will talk myself out of it thanks to 2 years of CBT over 10 years ago.
He agreed that my autonomic nervous system needed testing and I will be having a tilt table test in the next few months. I have now started coming off medications that I know stabilise my autonomic nervous system - like the pill. He didn't tell me to but I am educated enough to know through my own research that this will screw up the results. Progesterone is used as a first line treatment for blood pressure issues as is Mestinon and Sudafed.
I had a letter from the Dr yesterday detailing his findings from our 45 min appointment. Again it contained a series of errors, despite the fact that I had given him a typed medical history and a copy of a letter I had sent my GP outlining all my symptoms. I find it hard to understand if you have all the information in front of you how you can still get things wrong! On top of that despite him meeting my husband and stating in his letter I was in a supportive marriage it was addressed to Ms!!! WTF
In the letter he does have a bit of a veiled go at my GP for not helping more and treating my symptoms. He does agree I need autonomic nervous system testing which he will do - I now need to be referred again to the correct clinic.......I have only been waiting since May 2010. Sorry if I appear sarcastic! He also tells him that Mestinon does indeed help control low BP - my GP says my low BP is being caused by the mestinon.
However the letter wasn't without its pitfalls, he doesn't openly suggest I have a psychiatric evaluation but he states he finds it odd that the question of somatization hasn't been addressed. Yep that old medical diagnostic standby when they can't figure it out somatization! Its the patients fault they are sick, not their fault as they can't think outside the box! He also states that I should stop having tests performed on me and he should concentrate more on treating my symptoms and improving my functional capabilities. I agree they should be working out a treatment plan, but stopping tests??? How are they going to find out what is wrong with me if they don't even try?
So I am left yet again with good news and bad, unfortunately this is my life they are playing around with.
I am at present starting the process of changing GP's, I am hoping to move to another practice where the Dr's there are actually up for a challenge and don't just take their pay checks for doing sod all. I really don't know how my GP sleeps at night as if he treats me like this what does he do to his other chronically sick patients?
The GP practice I hope to move to have patients with autonomic nervous system problems - my current GP says POTS doesn't exist and you can't have autonomic nervous system problems unless you have MS or Parkinsons.
I have also provided him with the beighton scale, a score of over 5 means you are hypermobile a condition that runs with autonomic nervous system problems. I marked on each test what I could and couldn't do - its things like can you get your thumb to touch your wrist, can you put your little finger into a position of more than 90 degrees when your hand lies flat, those two I can do and is a score immediately of 4, I can also do several others. The condition causes unstable joints, joint pain and can affect the vascular system causing pooling. So my blood pools in my legs and feet when I sit with my feet on the floor (not raised) or when I stand. So when I shower my legs go purple, I get pains in my chest and the lack of blood flowing to my head causes me to pass out. Which I am doing.
But apparently according to my current GP this doesn't exist and I spend far too much time on the Internet collecting medical conditions. I would like to point out if my GP was actually providing me answers I wouldn't have to go onto the Internet and do hours of research - reading actual medical papers published on sites such as the lancet, PubMed. Its not sites that have no medical professional input.
So that's me Ive given you a potted update on whats happened over the last few months.
If I don't post again this year let me wish you all a very merry Christmas and a happy new year!
The MG KID