Welcome Rach ! Don't feel alone , with all you are going with, I also went through the frustration trying to get a diagnosis, & given drugs that made worse. Then I was diagnosed with the Mg With overlaps. They got me on the right meds, & explained,that the confusion with my diagnosis is I have another major illness, that they are still working on to diagnose. It is sad that they have to wait till so much damage is done, before they can put things together for a diagnosis.
I am sorry you are having to go through this, I am glad to meet you !
Mary

Rach, sorry to hear that about the mga and Oxford. I guess it's bad everywhere. At least here on this forum no one's going to tell you you're crazy or depressed. I just want you to know that most of us have been told we're crazy, go see a psychiatrist, go on antidepressents. It's really insulting but also, the world's biggest cop out. Can you imagine if your boss came to you and said, "here, fix this problem" and you say back, "eh, doesn't look like a problem to me, therefore I don't have to do anything and by the way, you must have a lot of personal issues, you're probably crazy. Okay, I want my paycheck now." It seems like the medical profession is the only profession where you can smirk and shrug your shoulders and insult your clients and make no effort to help them and still get paid a fortune. People are going to catch on eventually and I think the internet-educated are going to be the spark that lights that fire.

In the meantime keep telling yourself that you know what you know and you are not crazy. Keep trying to figure out ways to work the system to your advantage. Maybe you could complain that you were diagnosed by an MS specialist. That's not right. Can you appeal the medical records? When I went to my gp when this all first happened she insisted that I was depressed so I went to a psychiatrist and had her write a letter back that I wasn't depressed and now that's in my records which is good. Then another gp insisted that I had fibromylagia despite the fact that I don't have the symptoms (waste basket diagnosis in this case) so I went to a rheumatologist and had him write a letter back that I don't have fibromyalgia. Use their lack of psychological knowledge against them. If they say you are nuts, make them prove it - it will backfire on them. You can do this with a wide-eyed innocence that won't make them angry after all you just want to follow up on the wise advice, right? And then you can at least have the differing opinion on your record. It might be worth writing to Angela Vincent and see if you get a response. She may have heard hundreds of stories like yours and be sympathetic.

Good luck, keep trying!!

Rach, I emailed Dr. Vincent years ago about the MuSk test. My doctors office sent her my blood directly. I found her to be VERY nice, responsive and professional.

I accidentally found myself in the middle of a group of neurologists who were completely unprofessional to say the least and I was blacklisted by them. I know how it feels. But sometimes you have to work around them and find people like Dr. Vincent who are quite wonderful.

I don't think you have anything to lose at this point. You are NOT doing well at all and I am frankly concerned that you could go into a crisis, even on a Friday, and die because these idiots won't see what is right in front of them. NORMAL people, HEALTHY people just don't have their O2 stats drop like that. And you can't hold your breath to make that happen!

I'm sorry you have been treated so badly. These kind of situations make my blood boil.

Annie

Hi,

Thanks again everyone for your kind responses. I will be completely honest and say I have been in the depths of despair today and your posts have lifted me greatly.

I have decided that I will contact Professor Vincent, however I need a few days to put together a decent email so I dont come across as hysterical!

I have had bloods done before, at Oxfors and other labs, the ach one and musk. All came back negative, as did RNS and SFEMG. However I did read a paper from Oxford that tested 44 patients with seropositive MG. Guess how many had a positive SFEMG? 11. Yes thats right 11. So how can that test be so accurate? If the tests for Myasthenia were so accurate why are they looking for new ones? No Dr has ever had a reply for that one.

Its awful, but Im glad Im not alone. My memory is pants but I want to say thanks for the post about Drs being the only profession that are rude to their clients and get paid for it.

I have found more support here in a day than I have in two years on another site. Thanks for your ideas and suggestions. Thank you also for sharing your personal experiences with a total stranger.

My mum visits this site and I know she has found your comments reassuring, especially when I was crying down the phone this afternoon due to sheer frustration!

The only way I can describe how I feel is that its like being in a glass bubble. People can see me but they don't hear me. Im hammering away on the glass but they dont want to know.

I think it was Annies post which expressed it, along the lines of they will kill you. Thats exactly how I feel. How ill do I need to get before someone takes some notice. I do worry that one day due to their ignorance I will die due to the mistakes they are making.

Its not acceptable to treat another human being in this way. Especially when your code of ethics state first do no harm.

Thank you, thank you, thank you,

Rach x

Hi Rach! Hope this post finds you stronger!

MG is a tricky little disease. It is rare. It sux. But it does get better! I know I say that over and over - it has become my mantra -

I PRAY that Dr. Vincent gives you the dx you need. You need medical help! I know what you mean about being in a bubble. It is so frustrating. People who don't have this disease truly do not understand all that we go through to get our dx. Then once we have our dx they do not understand our disease. Thankfully neurotalk is here for you - for all of us!

"Specialists" are notorious for their enormous egos. They think they know everything and we are all nuts. Thankfully, thankfully, I found an amazing one - but I am the exception, not the rule.

It sounds like your mom is wonderful and supportive. You are so lucky to have that! My mom is great, but she is like my kid..........family - what can you do?!?

You are so right when you say that they are endangering your life with their ignorance. That is intolerable. No one should be made to suffer due to ignorance - especially from the so called "medical" profession.

If you do have problems breathing, please call 911! I didn't and it almost cost me my life.

We are ALL pulling for you!

Big, big hugs!
Erin

rach73-just thinking of you-hope you had a good day!! remember this is only one rotten year out of however many you ahve lived and hopefully you have many more to come!! my advice for for helping to get through rough times is to go out-even if you sit on the front steps 5 times a day for 10 mins!!! try to distract yourself however you find pleasure. if you need medicine /counseling try to get it and don't wonder what anybody else thinks!! they are not living your life- make it a good as you can however you can!! end of my mother sermon as my kids would say! but really i hope things are better for you-remember all of us are here for you!!

Hi

May I say yet again Thank you.

I always try and do something that cheers me up. I get really miserable when I can't get out the house. Today I went out for a shuffle with the dogs. The path I walked would have taken a normal person around 4 mins. It took me twenty! But hey the dogs loved it. I had to walk with 2 sticks and its wiped me for the rest of the day but it was lovely watching the sun rise and hear the cuckoo calling.

So after the last two days I feel positively turbo charged! But I think two days in bed always seem to give me a little bit more.

Thanks once again.

Im now preparing some notes for my hospital visit. Im going to see if we can get a little empathy! Im going ask if he was ill would he accept the wait and see approach!

I will update you and let you know how I get on.

Rach

Hey hon! You go, girl! Give em' hell! I love your moxie! You are a FIGHTER!

I am so happy to hear you were able to get out of the house for a while! I know what a treat it is for me to just get in my car and go! No place in particular - just driving with the top down and music blaring! What a feeling!

You are so smart to ask your dr if (s)he would "wait and see" if they were going through what you are going through.......brilliant!

Hang in there! You;'ve got the guts to stick this out!

Big, big hugs!
Erin

Hihi Rach,

so sorry to hear about what you are going through. I was just as frustrated as you are when i simply couldn't get a diagnosis, even though i practically couldn't walk. my limbs would tremble too, and some of your symptoms are what i am feeling too, love the bit on having an elephant on your chest!

a note about emg though, i just redid my emg at another hospital and they've found some abnormalities in my emg, though the first hospital i did it at couldn't find anything wrong. Its just a mth difference between the two tests so i myself am flabbergasted.

Initially i was diagnosed as having conversion disorder and referred to a psychiatrist as well as a psychologists, nad amazingly i managed to convince both i didnt have conversion disorder, and got them to write a letter that my symptoms weren't due to mood or stress symptoms. that letter helped me in getting that diagnosis revoked, as in singapore, our medical records are shared between hospitals too. =) I too thought i was going crazy, but it was more due to the symptoms rather than any existing mental or mood stress that i had, and the psychologist and psychiatrist both agreed.

Mg's quite rare in Singapore where I was, so now am overseas trying to get a proper diagnosis. I agree with Annie, even if its not MG, it could be another muscle disease or other health issues which need medical help! Do not give up on yourself, the symptoms u are experiencing can't be due to you wanting to feel them. Its crazy for them to even suggest that.

Welcome to this great forum, you'll love it here! Feel free to come here and rant, cos the people here are simply great!

Hang on and cheer up my friend! Have a great week ahead!

Hi,
sorry for the slow response but I have been in hospital since Monday and have just got out today.

I had a Tensillon Test there, now despite the fact my ptosis resolved and I could start to talk again, this only lasted a minute and apparently this is not a positive result. I would like your thoughts.

I also did an ice pack test and my ptosis resolved but again for around a minute. Again I have been told it was not a positive result.

This morning in hospital I couldn't see my left eye lid would hardly move and when it did open my eye ball was jerking all over the place. I was very weak etc.

My consultant has stated I dont have MG but Cortical Plasticity from a virus he reckons that gave me the Ptosis in Januray 2007.

To say Im distressed is an understatement. Luckily we used my phone to video the tests. Once I have figured out how to download those onto the computer I will be emailing them to Prof. Vincent for a second opinion.

I went into hospital on monday as my lower face drooped, I looked like a sad clown and I couldnt talk. Basically they have left me lying in a hospital bed for 5 days.

When I was told this morning about the cortical plasticity I lost it. I am at the end of what has been a rather long tether. They were going to discharge me when I calmed down, as in the heat of the moment I said currently I have no life so I might as well not continue living. If they gave me a hundred paracetamol I would take them and not bother them again. I am very angry and just to reassure you I wont be doing that. I just dont know what to do. I discharged myself and got my mum to take me home. Im home barely able to walk and they say theres nothing they can do to help me.

So there, thats my week!

Rach