Quote:
Originally Posted by xanadu
Thanks Annie and Nicky, I am sorry if I appeared to rant a little but I am getting so tired of being tired with no help. I have had both types of blood tests done twice ( negative ) an EMG ( negative) and a Tensilon Test done ( negative but I heard the neuro say he had left some in the line so am unsure what he did). I take cortisone for another autoimmune condition and that Dr now tells me that it will affect the MG tests. I have not had the single fibre test done. I have had to wait 18 months for that and now I wonder if it will be accurate anyway after what my last Specialist said.
I am in Australia and this week has suddenly turned hot. A week of 100F+ and I simply cannot breath unless I sit in front of an air conditioner. I do not have asthma ( has been tested ) but significant breathing weakness.
I have severe hyponeas during REM sleep only. CPAP was trialled and made me worse.It choked me.
I have read how thymomas can be hidden on a CT scan and that scares me too. It has been 18 months since my CT was done and no one seems to be caring or rechecking that.
When at my worst last year I had eye lid closing, facial 'stiffness', slurred speech and problems chewing and swallowing food. I also could not cut up my own meal. My arms and legs went weak as well and I had one or two major falls. During the last few months this seemed to improve a little but with this sudden heat I find I cannot function again. I see my Neuro next month for his 6 monthly check. I am so scared he will just say 'come back in 6 months' again.
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I am sorry you have not had any success in being diagnosed.
I am amazed when I read this forum and others to find how poor neuro doctors are in looking at the person as a person and dealing quickly with their obvious difficulties.
TAKE CONTROL.
I am not sure whether Australia is private healthcare or Gvernment.
In the Uk it is government but you can buy private insurance.
If it is private you are in control in the Uk.
In America it appears from this website it is the $ and what the insurance companies will cover .
My American friends, please tell me I am wrong .
I will explain my case .
I am a 58 year old man.
I lost my job about six years ago as a result of a condition called spinal stenosis.
I was a factory Manager on my feet all day long and could no longer walk without severe pain in my back.
If I walk further than fifty yards my right leg will go numb and I cannot feel it on the ground.
I went into severe depression.
I left my youngest child to school and then returned to bed and pulled the covers over until I was due to pick her up.
Through the help of my wife to cut a long story short I got back into work for the government in a call centre chasing absent fathers for child maintenance.
It was a huge come down for me but it got me out of the house and I started to exist again.
I then saw a paper add for a property training company.
I was looking for somewhere I could use my brain.
I paid £12000 for the course.
Again to cut this short I met a mentor of the course who said if I paid him He could find discount property .
Together with a crooked solicitor they robbed me and now have £1,500,
000 debt.
I ahd to hid this from my daughter for three years as she was finishing school to go to University.
She is now in University.
I can now deal with each mortgage company in freedom and know I will achieve a positive result by the help of god.
Now my biggie.
On this site I have read an article on this site and at the moment I have lost the site .
It was published by the Mda with reference to myasthenia gravis and food supplements.
It lists possible causes of why things go wrong .
It identifies extreme stress as one possibilty.
I know I have been under extreme stress and i know throughout my life so far my emotions bubble just under the surface and break into my voice at times.
How I was diagnosed
The girl opposite me in work noticed my Right was coming down each day by the end of the day.
I reported it to my Obtician who referred my by letter to my family doctor practice.
You see on a walk in the first doctor available .
I was lucky to get a newly qualified doctor.
She carried out physical tests.
She suspected myastenia gravis and sent for blood test.
These confirmed myastenia gravis .
However in the meantime I presented myself at accident and emergency believing that I was having a heart attack because it felt like someone was standing on my chest and i could not breathe.
The ECG was fine but my oxygen level was low.
Because of the history I just described they kept me in .
I was referred iniatially to a medical ward because I had presented as a possible cardio patient but maybe neuro.
After the hospital consultant had repeated the physical tests he referred me to neuro.
Next day The neuro consultant saw me .
He repeated the physical tests and sent for confirming blood tests.
He then told me the next day I had the condition and started treating me .
He kept me in hospital to monitor by observations blood pressure blood sugar etc until he had moved me up to 60mg per day of steroid.
I was released from hospital.
I monitored the effect of the drugs all week long .
When The mestinon wore of I started wheezing if I breathed deeper and eventually the feet on my chest returned.
I have read extensively on this and other sites .
I was helped to understand the condition by the wonderful people here.
I had a breathing crisis on the friday night.
When I went to rise to go to bed the chest pain severe returned .
I took the mestinon at four hours and the pain disappeared and my breathing returned to normal.
I continued at four hours until tuesday when I returned to the family doctor practice.
I spoke to the main doctor who had on computer all the notes from the previous consultation.
I explained what had happened .
He believed the most important thing was to keep the breathing under control and prescibed four hourly mestinon.
I monitored this all week and the breathing was 75% better .
The mestinon starts decaying for me at three hours and the breathing got worse but it was tolerable.
When I took the mestinon again i would get three more hours relief .
I changed the dose to every three hours and I have had the best breathing for thirty years.
However because I am on steroid I have been waiting on it kicking in to reduce the need for mestinon at high dose.
I have been paranoid for the last week cleaning everything ,constantly talking about the disorder .
my wife told me this this so I decided to review the situation .
I stopped at 11:30pm last night the mestinon.
I will start again this morning the regime as laid out by the hospital consultant in the certain knowledge If I get distressed I can move the mestinon to suit.
Loooooooooooooooooon post but I hope it helps you and I will hwlp in every way I can to answer your questions,
thinking of you in your pain,
Patrick