Rach, You've probably gone to bed by now but I had to add a few things.

First, Make sure he knows that you respect him - in spite of probably disagreeing with him. You don't want to make a doctor your enemy, even though he's already acting like one.

Second, Go through very methodically, without any drama, the "facts" that show you have what looks like MG. Do NOT make the declaration that you have MG because, if you are dealing with an arrogant person/doctor, they will see that declaration as "you knowing more than they do." Nothing ticks off doctors more.

Three, You can politely tell him that you looked up "cognitive plasticity" and found it to not be a disease but a state of the brain that is good to have. Or make him define what he means by that.

You could always go the emotional route and ask him if he has a daughter and how would he like her to be treated if she had all the symptoms and test results pointing to MG?

I know it's hard not to make snide comments or be sarcastic with a doctor who is being such an idiot. Remember that no doctor likes to be proven wrong and what you are telling him is basically doing that. You could say "remember when you said I was clinically weak?" or "what do you think of those oxygen stats going so low?"

If the appt. is going nowhere, you could always ask if he would like to be responsible for your death, when you die in your sleep of anoxia (no oxygen).

I'm not telling you what to say - that's totally up to you. Just giving you some more ideas from all my experiences. You are in a tough situation and it personally makes me insane how doctors treat patients in your country. You have very objective evidence, that cannot be "faked," like the O2 stats and the response to Tensilon.

And you may want to bring up testing for congenital myasthenic syndromes, which can be done with blood tests (Oxford does those). They are very specialized tests which only a handful of places around the world do. Or ask to have the antibodies for MG redone.

I hope the appointment goes well. I know how hard this is and I wish nothing but the best for you.

Annie

Thanks for all the support, advice and prayers I really appreciate it.

Im quite poorly at the moment so I haven't been able to do much today. Been in bed since 1830 GMT!

Had bilateral ptosis again and droopy mouth. Not swallowing properly and finding that 90mg of mestinon is the only thing that relieves this.

Have ordered several copies of the MGFA booklet, printed it off also as struggling to read computer screen. Its very good although Im only up to page 63 there are conflicting opinions in different chapters. One states any response to Tensilon is positive, another that response should last two to five minutes. However the good news is by this is that Im positive on both counts. Ptosis resolved for over 2 minutes speech for over 5.

Thanks again
Rach

Hi Rach73
I am so sorry to hear you are having such a tough time with your Dr. Everyone deserves a general physician they can trust and depend on to do the best thing for them. I guess that can be a hard thing to find in any country. You will be in my thoughts.

ckitty

Hey hon, do hope you're feeling better! Its frustrating dealing with all these doc/neuros who refuse to listen sometimes. Annie's simply great when handing out all these advices, she's wonderful! Keep us updated on what happens!

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)

Ohh Rach,

I'm boiling inside for you, actually I'm upset for you.
How very frustrating it must be. Thankfully here if you think your GP is an idiot, or just don't plain trust thier care, you can go to another one. I have a great one who listens, does blood tests to find out what might be wrong with me "this time", he really is a great guy.
Thinking of you at this trying time, wish I could do something.........
take care
Kate

Rach,
Hope you can get a new doctor soon, you at least deserve a doctor that will give some effort into your situation. So sorry !
Mary

Hi Rach,

I can only imagine how frustrated and angry you must feel. I am so sorry for all that you are going through. You did a wonderful job and sounds like you put him on the spot more than a few times. Do you think there is any chance you will get approved for a referral? I wish you all the best and as you know we are all pulling for you. Take care.

Hugs,
Pat

Hey sweetheart! First off, let me say that I am so proud of you for the way you handled yourself - I don;t know how you did that! You must have nerves of steel!

Second, let me say that your dr is a giant *** and you deserve sooooo much better! I don;t know how you can get another dr @ this point, but you just have to have one.........ez for me to say, I know.....but there has to be something you can do - there just has to!

I am so sorry that it went so badly. You have been so brave and strong. It isn't fair that you have to be in order to live, but some people just have inner strength and that is YOU!

Big hugs!
Erin