I have the symptoms- rather mildly perhaps compared to many here - but non the less the puzzling symptoms are there ( and not there). I have the family history. I have the autoimmune history. I have the enlarged Thymus. I have the failed Respiratory Tests. But every MG test so far has been negative. After a rather difficult dental appt this week ( needing jaw prop, choking on saliva etc) the dentist seemed to think MG. The Respiratory Dr already does. But no one will diagnose me. Can I be trialled on Mestinon ? Is it dangerous to do that ? Can you just have mild MG and not look sick enough for the Drs to see it ? I know I always get to the appts early and rest in the waiting room. Should I try to avoid that so he can see how I really am ? You tell the Drs and even when they say they understand - I do not think they do. They only see you for 10 mins and then it is another 6 month wait to the next appt. Sometimes I think that I will only be diagnosed at autopsy!

Hi, and welcome!

The most important step in getting diagnosed is finding an MG expert (neurologist). Maybe if you say what area you live in, someone here can recommend one to you.

A neuro-ophthalmologist can also identify ocular MG. They have specialized tests to figure it out - and to say if you have double vision. Some of them still do the Tensilon test, where they inject 2 mg. of Tensilon at a time (up to 10 mg.) to see if your ocular MG (ptosis, pronounced toe-sis) gets better.

It's best to figure out for sure if you have MG. Mestinon is not a placebo and can make people without MG weaker. It can be dangerous.

Did they do a Single Fiber EMG? It's a more sensitive type of EMG. What other tests did they do? They need to test clinically weak muscles. Did they do both the Acetylcholine Antibody Panel (binding, blocking and modulating antibodies) and the MuSK antibody test?

Did they use Novacaine at the dental appt.? It is relatively contraindicated in MG. It can make muscles weaker, especially the swallowing muscles. My face droops really bad after having a dental appt.

The eye drops they use to test your eyes contain Atropine, which is like the opposite of Mestinon. It can make you weaker. There are lots of drugs which are relatively contraindicated in MG. The muscle relaxants especially.

I know, it can take a long time to be diagnosed. But it's important to get the diagnosis right, since the drugs have side effects and can make someone without MG worse. Plus, they can also make the tests appear normal when they aren't.

I hope you can get some help soon.

Annie

Welcome, Xanadu!

When you say that all of the tests are negative, are you referring to just the blood tests, or also the single fibre EMG and repetitive nerve stimulation test(s)?

Are difficulty swallowing and breathing troubles your only symptoms of muscle weakness, or main ones?

I definately think that the abnormality of your thymus is a red-flag that MG is prolly the culprit, but it can be enlarged in some other autoimmune diseases, but has a more common affiliation with MG- plus, I'm sure that your dentist and respiratory doctor know a thing or two about a thing or two, so you have them on your side, so that's really good..

When I went to see my neuro. for the first time, I was an emotional wreck because of how bad my speech was. I was really terrified of what he was going to tell me (bulbar palsy or something). I didn't really have to do anything prior to the appointment because my symptoms occured even in the mornings and were severe...But, if I had gone 9-months earlier (I was having occasional slurred speech which I attributed to being tired, and some breathing problems which I attributed to smoking), it may not have been discovered, so I understand your fears of not getting the correct diagnosis...

I think that your symptoms and thymus speak for themselves. Lots of people with seronegative MG have an enlarged thymus with no detectable antibodies. It would be tough if the electrical tests were also negative, but it seems that it would be difficult to get a good reading if the only muscles that are affected are swallowing and breathing...I'm not sure where they'd put the needle...They put the needle on my forehead and near my lips..I have major facial weakness...

I wish you lots of luck and sorry about the long post! lol

P.S. I know that you must be scared, but this is an awesome group- lots of different perspectives, and people just like you dealing with the same issues- you're not alone!

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.

X

I forgot to say - I think it was Novacaine he used. Is that the non adrenaline type one ?

I have had a reaction to atropine eye drops before after a routine eye exam. I was very weak for hours and at my last visit refused to have them again ( staff tried to make me) and he got very angry with me.

The day of my Tensilon Test I felt terrible after and the Neuro and his two 'clowns' he had dragged into the consult with him - all just left me immediately ( after the negative result) and I was left to stumble my way out of a large and near empty public hospital, catch a bus and find the car and drive 150km home. I still believe that he was very unprofessional to have put me through that 'circus'. It was very lucky I did not crash the car. He had not told me he was booking me in for a tensilon test - just the EMG or else I would have not taken the car. The tensilon test was done immediately after the EMG where I developed a bad reaction and had to have a mega dose of cortisone - so the Tensilon Test was then done with mega cortisone ..

I have a new Neuro now but it has taken 18 months extra time.

I cannot get a Dr to care... They only see me for 10 mins and I appear alright to them they say. They do not follow me home and see how I struggle and can have good days and bad days.

X

Xanadu,

My heart goes out to you. It took me 8 years to get diagnosed and I completely understand your sense of panicked despair. I'm still not really getting the help I need. I also understand that horrible feeling of not being able to breathe. I was so glad when fall kicked in here and at least if I woke up struggling for breath I could sit by an open window and breath in the cold air.

I don't have any magic answers for you but my advice would be two things. First, take pictures and videos whenever you have visual symptoms that you can record. Second, don't be afraid to keep asking for different opinions. I went through six neurologists before I was diagnosed. That's six AFTER I had received two positive antibody tests.

I have very severe sleep apnea too. If you're having difficulty breathing and feeling choked by the CPAP maybe you could look into getting a bipap which will drop the pressure on the out breath. I have a CPAP (getting titrated for a bipap on Monday! See what an official diagnosis can get you? ) and sometimes I get that same feeling, although I still love it and won't go a night without. I found that I have to turn off the humidifier completely. That warm humid air just shuts down my breathing muscles. Do you have a ramp button on your CPAP? That will make it start very slowly so you won't notice it until your asleep. Also, try different masks, they can feel very different, perhaps one with nasal pillows would help you feel less like you're being suffocated with a pillow. You probably already know all of that, but I thought I'd mention it. Please don't give up on trying to make it work for you somehow. I realize now I had severe sleep apnea from the start (36% of mg patients have sleep apnea - study by Nicolle) and in the eighth year, ironically just before I put two and two together and got help, I developed a raging case of diabetes and the year before had been told that I have fatty liver disease. Both of those diseases are now linked to severe sleep apnea. Plus the fatigue, the mental confusion. Ugh. It's awful.

Try to keep the faith, the road to a diagnosis can be lonely and discouraging and humiliating. I can't tell you what's wrong but I can tell you what you already know - you just have to keep pursuing this until you find an answer.

Ally

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

8 years ! How did you stay sane Ally ? Mine has been two years now and it is hard to keep positive. As it has been - I had a few good months during our Winter and I thought perhaps I had been imagining it all. But now with the first of the summer heat I am back showing more symptoms again.

I do not have CPAP at all. The machine was a trial after the sleep study showed the REM sleep problem. I tried several different masks but only the one type of machine. That is all that Dr wrote the prescription for, and he does not want to see me again. I do find that if I take a small amount of Pred before bedtime that I seem to sleep better - so have been doing that. The respiratory dr told me to do that after my lungs started to get mucous. But he then said that was the last appt. I just feel I am being tossed around in circles. :-(

Hi Xanadu,

welcome from a fellow Aussie, I'm in Western Australia.

So sorry you are having a hard time.
Yep the summer heat knocks me for six, I hibernate in my airconditioned unit.
I also understand Drs not caring, I have to drive about 250km to the Perth hospital for my 6 monthly Dr appointment to get one of my medications, and I'm sure he thinks its a walk in the park, wonders why I can't drive up and back in one day!!!!!! (I get my sister to drive me)
Depending on which state you are, there are a few MG support groups who could help you out with good mg neuros, although some people are a bit wary about recommending doctors, not sure why.
Even after nearly 7 years I still see my neuro ever 4 months, so I guess he must be concerned(I hope so anyways) and thankfully they are only a 30minute drive away.
take care,
Kate

Ya, you feel that way because you are being tossed around in circles. Ugh. Actually it sounds like you're just being tossed out the door Buh Bye!!!!

I don't understand why docs don't have any sense of obligation to see the patient through until they're care for. But they don't, one of the hard lessons I've learned in the past 10 years.

Why did they test you on the CPAP and then not give you one? Did i miss something? Can you go back and get one? Go get one!!!! You need it!! Just be patient and take it in baby steps - it'll take 8 weeks to get used it on average.

Have you looked into Congenital Myasthenic Syndromes? Didn't you say that you had symptoms at the age of 10? There are several different types and do not result in a positive antibody test. And then, for instance, in familial limb girld myasthenia the nerve conduction studies and needle emg's were normal at rest but after having the patient run up the stairs three times then showed significant decrement in some muscles. I have a great book which describes the different types of congenital myasthic syndromes. Pretty fascinating. Somebody else who knows a lot more about all this will come along and explain better, but I just wanted to mention it to you.

By the way, the fact that your sleep doctor doesn't want to see you again seems like a mere trifle to be blown away in the wind. In other words, who cares? Call him back and let him know you need to be seen again. And push for a bipap this time.

Also, if I were you I'd take redtail's advice and get hold of the mg associations in Australia. Somebody will eventually help you to the right neuro.



Ally