I wanted to start another thread so that everyone who was kind enough to give me advice and wish me luck would see it. Thank you all so much for the replies you posted - I feel very privileged to have found you all and am so grateful for your amazing support!

I took all of your advice and went to my appointment prepared - I had Fortunatos's check list in my mind and my lists (thank you cait24!!) I wrote a symptom list Chronological order and order of severity, I also noted a brief history and the questions I wanted to ask in bullet form keeping purely to the facts without emotional personalizations as you both advised on a second sheet. I also took an hourly photo diary to show the fluctuations my face and eye can go through during a days activity/rest and before and after photos of a 30 second upward gaze and a 3 min ice pack test. I made a copy for the Dr and handed it to him so that I wouldn't miss anything out as soon as I sat down!

I have to say that I couldn't have gone to a better Neurologist - it turns out that unbeknownst to me, he takes national referrals for possible Myasthenia cases and is the top man in the UK! He said there is nothing else it could be, he thanked me for the photos (the photos my last neuro seemed irritated by before he told me I do not have MG and there is no evidence of it?) and said everything is highly suggestive of Myasthenia the only "fly in the ointment" is that my facial droop is one sided where he would generally expect it to be both sides. He said there is a chance it isn't MG but if that becomes the case I still have symptoms which need treating whatever their cause (like my facial droop!) and he will make sure I get whatever I need. He is arranging for me to go to his nerve/muscle testing clinics in the next few weeks and will be testing my facial muscles and possibly doing the MuSK antibody test.

I have to say that I am so relieved to have found a Dr who seemed to understand what I was saying instead of looking at me like I had lost my mind - and a Dr who actually wants to help me whatever the cause of my symptoms and not just try to disprove or rule everything out!!

Thank you all again for all of your support and well wishes - you must be a very powerful group as it has taken me 9 years to get to this point!! I am eternally grateful to you all.......Eve.x

Congrats! finding the right neuro, is most of the battle.

A lot of MGers have more severe symptoms on one side. I, myself, have pronounced facial droop on my right side. It may look like the other side is not affected, but it is. It is just so much more pronounced on the right, that the left is overlooked. I wish you continued success on your MG journey.

If it were not for this group, I think I still would not have diagnosis and treatment. They are a formidable, caring group.

kathie

I'm glad that you found a good neuro! My right side is much worse than my left. This includes my eyes, my face, my arms, and my legs.

so glad your appointment went so well, it is SO hard to find a good neuro, and one that will truly listen to you!!! I want one! Hope all the testing goes well and you get the help you need!

I think we have seen the sane top guy in the UK based in John Radcliffe Oxford.

A gentle word of warning, I really hope he has changed his ways and treats you with dignity and respect. Unfortunately myself and other MG patients / waiting to be diagnosed patients have found he's very nice to you in person but says a totally different thing in the letters to your gp or local consultant.

He told me he believed I had MG his chief neuro opthalmologist told me without a doubt I did. However when bloods etc came back negative, the promises of ivig etc disappeared and he told all my drs I was making it all up.

Yet here I am 3 years later with nystagmus, bilateral and unilateral ptosis, etc etc ptosis that still resolves with mestinon or an ice pack. I have been referred to an ophthalmologist as this UK specialist poisoned the local neuro dept so they now refuse to treat me. ( this is the first day this week I can actually see).

I sincerely hope that he treats you and you get a diagnosis and are not left like I am by this wonderful UK expert.

Rach

Hi Rach

I am so sorry that you are having such a rough time, there is nothing worse than having to deal with these symptoms on a daily basis without the unnecessary treatment we seem to receive from Doctors -It makes me wonder why some people decide to become Doctors, surely it is because they care and want to help people? Clearly from the treatment most people on this forum have received over the years - this is definitely NOT the case!

Thank you for your word of warning, I am definitely not getting my hopes up as I have not had the greatest experiences with Doctors and Neurologists in the past but I wonder if we have seen the same Dr?? I went to Manchester and this Dr runs a Myasthenia Clinic from there - he is on the MGA website and has previously spent time in the research process with the main lady at Oxford (I'm not sure if I am allowed to mention names!) He said he takes national referrals from Doctors throughout the country who suspect Myasthenia at his Manchester clinic so I assume he's one of the top consultants (but that is only my assumption!)

I was most impressed by his manner and how he said that it didn't matter what the cause of my symptoms were - they need treating and he would see to it. I know I only have his word at this point so things may change but he seemed genuine?? He said that "the dreaded functional diagnosis" (as he put it) was where Dr's are esentially saying "it's in your head" and is irrelevant, he said that if someone came to him with a pain, it wouldn't matter if it was due to a psychological issue or a physical problem that he could actually see - all pain stems from "the head" is a problem and needs treating.

As I said, I only have his word for this at this point but I was relieved to find someone who didn't look at me like I had 2 heads when I described my symptoms as I have in the past (!!) and who seemed to want to help whatever the cause of my symptoms - which is all I could ask for. He was very good to say there is a chance its not but he wanted to check how my nerves are working in any case and seemed to want to find the cause of the problem and not just rule everything out, like the others!!

I really hope your appointment with the Ophthalmologist gives you the answers you need - especially as the specialist Ophthalmologist was so certain you do have it! Do you have a date yet? Do you mind me asking what tests they did at Oxford to rule it out so brutally?? I am so scared for my tests, I dread there being no answer for me but I am hoping he will keep to his word and help me the best he can whatever the results!x

Hi
Its not the same Dr, so I'm pleased for you.

I've had all the blood tests, 4 sfemgs, 2 tension tests one positive and one negative.

Its funny you quoted the Dr about saying all illness psychosomatic or organic need treated or something similar. My consultant that I see now said exactly the same thing. When I got the first letter back after seeing him it said if nothing is found on the tilt table test she has somatiform disorder and should be no longer allowed any tests on the NHS. Well the tilt table showed within seconds what was wrong. He has been totally different since then, unfortunately he had obviously been influenced by the rubbish put in my file from the other drs. I really can not fault him in the way he has treated me since the tilt table test. He now actually treats my sister who had been written off for 20 years as having M.E. no she has POTs and EDS the same as me.

However its obvious that this empathetic approach is being taught or publicised somewhere as honestly I've heard its been said to others also. When you learn others have heard it too you begin to realise that if the tests come back negative you will be either told or it will be put in your notes and you won't be told that you are in fact suffering from somitization disorder. Then anyone who has read your notes will no longer believe any medical complaint you have as that would be feeding into your delusion.

As a patient of the neurology department you are already at a disadvantage before you walk through the door as many of them believe 60% of their patients have functional symptoms.

I'm sorry I sound so negative I just don't want you being overly optimistic and then having your hopes dashed. I know how very depressed I got after being promised the moon and stars and walked away with nothing but a mental health disorder label.

I hope you get some where with this Dr, if you don't you still have the forum for support.

Rach