Hi
I thought I'd update you as I had my GP visit today. I was firm, but not argumentative and I didn't get emotional.
So firstly we talked about my carpel tunnel syndrome, as that had been tested in nerve conduction studies and showed negative. My GP then drops a bombshell "well you dont have to have a positive nerve conduction test for it still to be carpel tunnel syndrome." Im sat there thinking what are you saying? so you have to be positive for MG a potentially life threatening condition, but it accepted that it doesn't have to be positive for carpel tunnel. Who makes these rules up? Both are issues with the nerves and their conductivity.
Next we talk about why we want a referral (hubs is with me) I said that I wanted someone to have a fresh look at my case without the baggage. That I wasn't prepared to be written off at 35 etc. He said my request is reasonable but he feels the primary care trust wont sanction it without my consultants approval. (primary care trusts have the budget and decides who gets what very complicated, basically the hospital is in london outside my PCT). Even told him I would go back to Oxford if need be.
He then tells me that he doesn't think I have MG, based on the balance of probabilities and the fact that Mestinon doesn't work for me. I said it does work for me, he says its never been objectively proven to work for you. I said that I can't function without it. I said once when I was really bad that the mestinon wasn't working that was October 2008 and they have just seized on that. I told him if I didn't need the mestinon and was taking it in the quantities I have been taking it in I would be very very ill. He had no answer. I then said plus the tensilon test was positive, he told me it was negative, I said I responded for over 3 minutes thats a positive test. Again no answer. He then pipes up we will have to agree to disagree. I said thats why I want the referral. Someone needs to look at this independently. He also stated that my illness is not following the pattern for MG. So whats the pattern is there some great big secret that I haven't been told?If they ever actually bothered to take a history they would know the pattern.
I then say to him that I never got referred to clinical physcology, he looks on his screen and sees there is a letter there. Clinical physcology have sent me to the M.E clinic.Inside Im boiling with rage, but I calmly tell him I have been waiting for that one, my sister has M.E and that my symptoms are nothing like hers. I tell him I wont be attending and that I want to see the clinical physcologist. My theory being that the report will tell them Im not depressed, Im ill. He says diagnosis for M.e he makes rarely. Im starting to think the way you practice do you make any diagnosis LOL
I then tell him I have received no appointment for the stress test. He looks at me and says "stress test" I said " yeah when I wore the pulse ox my oxygen levels dipped they think Im holding my breath." Again I get no response.
At some point he says when will enough be enough, will we have to refer you again when you don't get the diagnosis you want. I said I want treatment and to live a relatively normal life. I dont think thats too much to ask.
To be honest I didn't hold out much hope and at least I got him to agree that my request is reasonable. He did say something odd though, he said "we are all trying to help you, if we miss something we can be taken to court". Its something that has never crossed my mind! All I want is to get better.
Im really p***** off, and fell like this has been a complete waste of time.
But thats how it went.
Love
Rach (Boffin)
