I've just got off the phone from the Oxford Dr's secretary.

It is his opinion that I don't have MG. They can't explain why my eyes move in a myasthenic way or why I respond to mestinon.

I'm now left with no diagnosis and no treatment. What the hell do I do now?

I'm just numb.

Rach

Oh, Rach!!

So, no diagnosis of MG -- and no diagnosis of anything else? Will they continue tests to try and see what they "think" is wrong with you? (Although we all know what you have.)

Im waiting for his full report which I should get this week. All I have at the moment is what his secretary read out over the phone. It doesn't say anything other than he's passing back to my neuro here (who hasn't bothered to see me since August).

His secretary has also given me the telephone number or the neuro opthalmologist that saw me. He said in 2008 it was MG but was over ruled. After he examined(this year in March) me he walked away with his students and told them all about MG so I don't think he has changed his mind.

Its very disheartening as at 36 years old I'm not prepared to be written off like this. However due to how the system works in the UK, my GP could block all further referrals. I'm trapped in a bloody nightmare.

I've shut down, I can only type. Really finding it difficult to talk to anyone. The pain inside me (emotional) is just overwhelming.

Thanks
Rach

Rach, I've got an artist friend who lost the sight in one eye (needlessly) due to the stupidity of the UK health-care system (sorry for being so blunt). I really don't know how you can address this -- but, I'm going to make suggestions about how I would address this here in the States.

I would contact my legislators -- local and national. I suppose that would be your representatives in ?Parliament? I do know just enough to know that the Queen no longer calls the shots -- you do elect the people who run your government -- so you can contact somebody and complain, right? Let them know that you will campaign for people who stand up for the rights of the sick!!

You have newspapers and television -- wouldn't this make a good "human interest" story? Don't go quietly into the night.......go kicking and screaming!!!

I know that what you WANT to do is crawl under the covers and cry -- and that is WHAT the health care system is COUNTING on -- that you WILL just "accept" this. At least that is what I think.

What do you have to lose??

You are in my prayers!!!

(((HUGS)))

Rach,
So sorry for what you are going through. My mom has a saying, the squeaky wheel gets the grease. So you need to keep up the fight! I agree with Jana, maybe a news story could help. Thinking of you.
Mel

Rach,

I am speechless...

Will you at least be able to continue taking Mestinon (or any other medications that are helping you)? This is terrible!!

I hope this situation improves, and quickly. MG (or MG-like symptoms, is there a difference?) is not easy to live with if you don't have the support of a doctor and medicine. I am thinking of you.

Thanks for your support. Its been 11 hours since I had the phone call. At the moment its still just sinking in. I still feel quite numb and I am snapping peoples heads off!

I'm still allowed to take mestinon - as far as I am aware, but this could all change when I get the report. I don't take anything other than that for my unknown illness which behaves and responds like MG! LOL

Its been a tough day as I am sure you can understand. At the moment I just need to chill out a bit and re-group.

I really can't do anything other than that until I see the report.

Thanks
Rach

Rach: I am fairly new to the site and am not aware of all your circumstances. I was diagnosed with ocular mg 14 months ago. Was seen by the neuro opth, neurologist and sent to a neuro muscular neurologist at the Medical University of SC. After a battery of tests, some negative for mg and only one positive for mg, he diagnosed me. I was wondering on what basis is your doctor saying now it is not mg?

There is another disease called Temporal Arteritis (TA) that has some very similiar symptoms - vision problems being one. Look it up on www.mayoclinic.com.

I would love to talk to you more about this....please keep us all posted, as wel all care about you.

Kathie Glenn

I'm so sorry Rach. Thought they were going to come through for you this time. I can't even imagine how you're feeling right now. You have been fighting such a long up hill battle and I admire your courage & strength. You will get the help you need, so hang in there. Get some rest and know we are all here for you.

Big Hugs,
Pat

Hi Rach,

I am so sorry for what you are experiencing (and equally mad at your medical system).

I know you have to wait for the medical report, but where ever did you end up with France (was it Angela Vincent?) Is that still an option? Or are there still some further options under your medical system that you can fight for?

I agree with previous posters....in this case you must become a very sqeaky wheel. Pls. keep us posted and don't give up!!

Sue