[FONT="Comic Sans MS"]((((Oh Rach))))).......((((hugs....)))) 5 good slaps with a wet fish for the docs....and...Oh horse-droppings, that's what it sounds like to me. You sound like the classic MG patient.

Do they think you have nothing better to do, than spend a bunch of money to keep going to doctors for relief of these symptoms for your own entertainment?

I don't have anything to add, as it seems like everyone else covered all that I was thinking. You need a doctor who understands and is willing to treat a sero-negative patient.
What good are they, if they aren't going to do their job, and take care of you? makes me so mad!

So sorry you had to go through this, truly sorry.
Much Love
Lizzie [/FONT

Hi everyone,

Your words of encouragement have meant so much. My mum reads this daily and she told me to have a look on line to see what people are saying!

As you can imagine I have been pretty down over the last few days.

I stopped taking the Mestinon Friday, as I believed that it wasn't making any difference. A friend of mine who is very sick with MG, warned me I would come down with a crash. Today it happened, I was shuffling to walk, my arms ached with fatigue and the ptosis that I have suffered from continuously for the last 4 weeks hasn't abated.( ptosis I have suffered with since 2007) By 2pm today I was desperate, so I took 60mg of mestinon and crawled back to bed. Guess what an hour later the ptosis has resolved and I can function. By function I mean walk without the "sexy" shuffle and move my arms properly.

Having had a long series of chats with my husband and my mum, we as someone else already has here have scoffed at cortical plasticity. As soon as I can work out how to download the video from my phone I will be sending the info to Angela Vincent. However I am scared as coming across as the hysterical female who is clinging to a diagnosis. Its a very tricky place to be.

My consultant is a nice man and Im sure very caring. However he is doing nothing to get me better and has now written me off with the waste paper basket diagnosis of cortical plasticity. An expectation of that I will be well in five years is unacceptable.

Thank you everyone for responding to my posts, Im so glad to have found this site and feel Im actually being listened to! Its ashame none of you are consultants!!!

Oh on another note I was examined by 4 medical students whilst in hospital last week. On clinical signs they all diagnosed MG. The same happened with 13 students I saw last year. Guess their minds arent closed yet! That obviously happens when they graduate!!!!!!

Love to all
Rach x

Hi Rach,

I am at a complete loss for words...printable ones anyway. I truly believe you will finally get some answers when you get in touch with Angela. In the meantime kiddo, stay strong as you have been and keep that great attitude. I am so glad you have your Mom and husband for support. I will keep you in my thoughts & prayers. We are always here for you. Take care and keep us posted.

Hugs,
Pat

Hi Rach:

I am new to the forum and have been following your story. I'd like to tell you about myself in hopes that it will help you continue in your resolve and purpose. Sorry for the long email, in advance.

You are not alone in the journey you are on trying to get an official diagnosis. I have some of the same issues as you as far as test results. I was diagnosed in 2005 by 2 different neurologists based solely on clinical symptoms. I went to a neurologist in Atlanta, Ga, who told me my symptoms were so strong that he didn't think we needed to spend the money for the testing other than blood work. My blood work is sero-negative, by the way. He gave me Mestinon and said that if it worked, then I definitely had myasthenia gravis. It was amazing how much it helped me even the first day.

I then decided to see a neurologist in my hometown in Tennessee as I didn't want to continue to make a long drive to Atlanta. My new doctor also said I definitely have MG and did no further testing. I started out on Mestinon and Prednisone but had to go off Presnisone (blood pressure, weight gain). My doctor started me on IVIG's and wanted me to take CellCept. My family doctor wasn't too sure about the CellCept and thought it would be a good idea for me to go to Duke University to the MG clinic there and see an "expert" which I did.

That was the most traumatizing doctor visit I've ever had in my life. I saw a well-known research doctor who, upon clinical exam, confirmed an MG diagnosis and said we would do the EMG testing since I had never had it done and am sero-negative. He also tested for the MUsK antibody which was also negative. The EMG tests were negative. He kept doing them repeatedly and kept re-checking my clinical signs. This went on most of the day. I felt like I was in shock when my husband and I left there. After the tests, he wouldn't say what he thought but asked me if I would be willing to come back in 3 months. I said I would, but knew I wouldn't. He really frightened me. He did tell me, though, that the first thing he would do is have me go on CellCept - which is the information I was looking for.

When I got home, I confessed to my neurologist that I had gone there for a second opinion. I hadn't wanted him to think I didn't have confidence in him. Anyway, he thought the whole thing was pretty much ridiculous (my paraphrase). He said that the EMG test would not be true because I was on Mestinon and had just had my IVIG treatment a few days before. The whole experience DID make me doubt myself, though, and whether I really had MG or something else. I was constantly questionning my doctor about it for a couple of years. I don't do that anymore - my symptoms and response to specific MG treatments is all I need to know. What did hurt me, though, is my self-doubt which caused me to try to ignore MG and push myself way too much and now I am on short-term disability which may turn into long-term disability.

Hang in there and stay true to yourself in spite of any and all "professionals." In time, it will work out. Don't stop taking your Mestinon! All you need to know is that it helps!

With love,

I'm sitting here with tears in my eyes, I'm glad to see that doctors are the same the world over. Its sooooo frustrating that drs can make us feel so inadequate, when we live with our bodies daily and they see us once every few months(well in my case 1 in 3 months) I actually stood up to my neuro, and was emphatic about what was wrong with me after seeing him for more than 3 years, this seemed to make our relationship much better. He still insists on saying "oh you are doing well" and I think, Hey come and live with me for a week and see how I'm doing in the real world!!!!!!!!!!!!!!!!!!!

I'm sorry you are going have gone through these things with drs, I still think a dr before he graduates should have to spend a while in hospital being treated for something to see just what we go through, it may help them be a little more compasionate
Kate

i also think we tend to either exagerrate or downplay our illnesses. i have had a long term gi for 20 something yrs. i always say"fine,ok" when asked about it even to drs and nurses when in hosp. that's how i deal with it -learn about it, control it as best i can and ignore it the best i can. it has given my doc many laughs when he touches my abdomen and i get tears in my eyes but i said fine 2 mins earlier! i had to find another dr yrs ago for gi problem[i worked in hosp] because he had trouble believing that i needed so much pain med when i could stand,talk and say fine at work[i wasn't really fine but i like to play pertend] also i think your mind aids in healing -positive thinking can contribute to feeling better . i hope everybody has as great a day as possible today-do something positive for yourself!!

Hi all,

just to make you laugh, thought I would go about down loading the special video evidence from my phone. You know what I cant find the bl***y cable. Luckily I was feeling quite good today so I could tear the house apart looking for it! We now look like we have been burgled and I still cant find it!

Im now too tired to put it all back......

oops!

Love
Rach x

Hi Rach,

Glad to hear you were feeling pretty good today! You'll probably find it where you least expect it to be. Hope you have another good day tomorrow. Take care.

Hugs,
Pat

Hi all,

I just thought I would give you an update on whats happening.

Mood wise Im very up and down. This has been due to the fact that my very caring neurologist isnt seeing me until the end of August. I also had a call from my gp's surgery to say that he wanted me to go in and see him, they demanded I made an appointment there and then. I told them I couldn't as I needed to know my husbands schedule, as I couldn't get to the surgery alone. This was scoffed at. Silly me obviously as the Drs secretary you have a degree in medicine, I apologise for my ignorance!

My GP is basically going to sit there and crow because since the disasterous visit to Oxford he believes that alot of my illness is phsycological. Thank you Oxford.

Today I have managed to down load the video onto my pc and then onto a disc and I will be sending it to the Weatherall Institute of Molecular Medicine, where Angela Vincent does her research.

Im asking for some advice here, I know I need to remain neutral in my covering letter. Should I give her a history of my symptoms ? Should I include my neurologists name and address along with my GP's? What do you all think?

Also does anyone else suffer with extreme self doubt when it comes to their illness? As you know I did the heel walking test last night, then today I question its results by telling myself I knew what the outcome would be so I put it on. I know this is crazy talk, but I dont believe myself sometimes....does anyone else have this?

Im taking the mestinon when my eye is closed and it opens after an hour. Im also taking it when I have bad muscle weakness. I have to take propantheline with it as I suffer really badly with side effects, horrific stomach aches which remind me of when I had bowel adhesions. I also get the runs, sorry I can't spell the D word!

I look forward to your responses and Im looking forward to a brighter future.


Rach

Hi Rach,
First, I have learned that if you get the information to the docs in the shortest form possible, the better. They don't want to take the time to review more that just the facts. I would list your history of symptoms, medication and response to the medication (including how long before it helps), and any tests you've had done so far. You are going for an objective review here, as I understand it, so state just the facts.

Secondly, I know exactly what you are feeling about the self doubt. There have been times I have said out loud "walk right" just to see if it would make any difference. I test my "abilities", or lack of, a lot when I'm having trouble.

I think it's sometimes a denial thing, and other times it is purely wondering if I'm really manufacturing this in my mind - though I've come to KNOW that's not the case. When the docs treat you as we have been treated (you especially), it does that to you.

When the doubts creep in, I remind myself that when this first hit me everything in my life was wonderful and the symptoms that showed were things I could never have dreamed up. Shoot, I had never heard of MG until my preliminary dx and had to ask a nurse which was worse - MS or MG!

When I am feeling good, like now, I can't even imitate my walk from when I am bad. I've tried when trying to explain just how bad it gets! I just can't do it the same.

Having had to research gobs of different neuro conditions, I have come to know that there are so many different conditions that can cause the same types of symptoms, including the weakness issues. Your response to the Mestinon is a very strong sign for MG of some form though.

Try to take care of yourself as best you can, maintain your diligence at getting a dx, and keep your postitive attitude. I'm confident you will have better days ahead!

Becky