I had a letter today from Oxford and I’m struggling to work out if its good or bad news.
My bloods have come back negative, but the Dr only mentions the standard ACHR and MuSK test which I have had done previously and been negative on. They were supposed to be using a more sensitive assay that had been recently developed. So either its been done and is negative or hasn’t been done and theres been a mess up in the lab. What is for sure is that I am actually no further on than I was in December 2009 or at any point since October 2008.
The other news is that they want me to stay at Oxford as an inpatient. They would like to re do the Tensilon Test and the Ice pack test. Both of which I have previously responded to. The dr wants to carry these out before doing what he classed a more invasive procedure like PLEX (Plasma Exchange). They also want me to see a neuro-opthamologist again, the same people I saw in October 2008.
I am suspicious and cautious purely because of the way I have been treated previously when I have been an inpatient.
The other news is that Dr Y has sent me a copy of the letter he sent Oxford. This has made me quite angry as it basically says she’s asking for referrals all over the place and is there any point?
To put the facts straight, I was sent to Oxford by Dr X in October 2008. I didn’t ask for the referral my consultant did. I asked to be referred to London queens square, but declined the referral when Oxford said that they would see me again. I was referred after I asked to see a pulmanologist locally, that referral proved I had de-saturation of oxygen. I then asked to be referred back to Oxford, as Oxford had asked me to be if my condition declined, which everyone had agreed it had. So I am not Dr shopping as Dr Y’s letter infers. I am doing what they should be doing which is to try and find out what is wrong with me. Its not difficult the clues are there. Im stable on steroids and I respond to mestinon.
I just struggle to see why this is so hard to diagnose.