Been away for far too long

Hi,
and guess what ? Many apologies to those of you who have been following my blog. I have been quite unwell - will get into that later and have been battling depression a bit over the summer. It got so bad that I didn't want to go onto the computer and email friends etc. So I apologise. I think that I just had enough after my trip to hospital in March and still getting no where.

Ok so whats happened since May when I did last my last entry? Well I had a load of blood tests done for all sorts of things like Lyme disease and Addisons. Addisons one came back as a low base cortisol level in the 300, but when I was given the stuff to stimulate the adrenal gland it went nuts. Having read about it I was given the old test which is enough chemical to stimulate pretty much dead adrenal glands! However this was ignored by my GP when I brought this up. I did score a low b12 serum level. I had 178, the cut off in the UK was 180, so it was a bit of a battle being treated. The only reason I was able to be treated was that I have numb hands and feet a sign of B12 deficiency. Within 5 days of taking the b12 replacement my feet were no longer numb and my head felt clearer than it had in months. I still get the odd day of hand numbness but that could be my old friend carpel tunnel playing up.

In June I was admitted to hospital for a week. I had really bad stomach pains, vomiting and my abdomen had swollen so I looked 9 months pregnant. After a variety of tests this was put down to adhesions / scar tissue from previous surgeries. I have been in pain ever since and have been taking morphine pretty regularly since then. I also started vomiting undigested food and swelling all the time. I saw a surgeon in August who believed it was gastroparesis and he thought as this is a neuromuscular disease that the stomach problems and all my other problems were related. Its funny everybody outside the speciality of neurology tells me I have a neuromuscular disease! Probably MG. Its a shame they aren't my drs I may actually get treatment if they were.

I am currently waiting on a referral to the gastroenterology team for tests, but I have been warned that this will be months rather than weeks. My symptoms are nausea, vomiting, dry heaving, no appetite, stomach pain and weight loss. I have lost 57lb in around 18 months. Somedays I can eat other days I struggle to even drink a cup of tea as what ever I swallow just sticks in the back of my throat. Thats when I know I will projectile vomit. Its got more serious lately as I vomited blood- that was the first time I had vomited all day- so it wasn't due to breaking capilaries at the back of my throat.

I would like to take this opportunity to say hello to Danka who left me a comment back in May. I hope that you find this and that my absence from the blog has meant you have stopped checking for new posts. I had no idea about your comment, my mum actually told me as she was reading my blog to see if I had made any new entries. I was very sorry to hear about your daughter and it also makes me angry as there are far too many of us out there suffering like this only to be told our symptoms are functional. Functional for you guys who aren't familiar with neurology talk is basically telling the patient its all in there heads or conversion disorder. It isn't surprising as neurologists seem to believe that 60% of their outpatient list suffers with functional symptoms and is wasting their precious time! I wonder what other profession would get away with saying that 60% of the time they dont know whats wrong? Its not a great track record is it? You wouldn't take your car to a garage where they only fixed it 40% of the time would you?

Danka, I am going to reply to your comments on the comment page! I hope you see this post.

Pain

Yesterday I suffered with the worst pain I have had for a very long time. I just didn't know what to do with myself. Thankfully its under control now, but yesterday felt like it was never going to end.

Occasionally I have flare ups of back pain. Yesterday it was low back pain and pain on both iliac crests. (Iliac crests are the bones of the pelvis that stick out when you lay down. Or if you are exceptionally skinny they are prominent all the time.) Both crests were tender (massive understatement) to the touch. Pain was running down both legs and my left leg was burning with my left foot feeling like it was being dunked in an ice cold bucket of water. All I could do was lay in bed as still as possible as the slightest movement had me shouting out in pain. I'm not ashamed to admit I wanted my mum!

I ended up calling the out of hours dr as I was running out of painkillers. I got codiene, which was great as I knew it would make me sleep, which would be an escape. The only thing was it lowered my blood pressure. Its was bouncing around below 85/45 and at one point went to 70/40. Not fun as when trying to get to the bathroom I thought I was going to pass out.

The pain is under control today, but Im certainly not pain free. So I shall see how it goes and then maybe speak to my GP again.