Thank you for the responses, I have calmed down a bit today

Alice MD, is a respiratory doctor called just that or do they have a special name? I have a follow up appt. on Oct.9 and I can ask if there is one in town. I think it was a basic lung test they gave me but it didn't show anything unusual, yet I have times daily with shallow breathing. I have explained it happens when I feel no anxiety but he still insists that's all it is.

After calming down some, I agree with you both, that the MG specialist has probably done me a favor by not seeing me. I can't understand being so casually dismissed without even an appointment to see for himself.

My husband and I both believe my doctor includes his thought on anxiety when he does a referral and it skews their thinking from the start. A cardiologist telling me (after saying I had tachycardia and very low blood pressure) to 'go home, take a warm bath and listen to soft music' was a clue to this.

I need to gather up the strength to get thru the next tests and see how things go and make a new plan if needed.

respiratory physician/ pulmonologist.

A basic lung test may be normal even in someone with significant breathing problems due to MG.

They need to do a more elaborate testing-which would include respiratory muscle strength (MIP/MEP), and also MVV. They will not do this routinely. They only do it if they consider the possibility of neuromuscular disease.

Physicians putting psychiatric diagnoses on their referral letters can be very damaging (although it is a good way to "screen" a good doctor=one which will not be influenced by it).

Thank you alice md, I will ask my doctor about a respiratory physician/ pulmonologist at my next appointment and get a copy of my lung test to see what was actually done.

I had my MRI on Saturday and (much to my surprise) my doctor changed it to just a brain and neck and did not include my spine, I don't know why. I am trying to find a neuro in the Toronto area that might know about MG and see if they will see me. No luck so far but I don't really know how to go about it either It usually helps if I show up at my appt. with a name of a doctor myself when asking for a referral.

I went back to my doctor and my MRI was clear. Good news but I am at the point of just wanting any test to show something so I could possibly get treated. Not a good way to think.

He claimed my thyroid ultrasound was clear but I read the copy after leaving and it said I have small nodes measuring 5 & 3 mm and recommends a follow-up ultrasound in six months. It sounds not serious but I will still ask him why he said it was clear.

alice md, I got a copy of my lung test and was wondering if you could tell me if the test for MG was done as I don't understand it. It says:

Methacholine inhalation challenge is negative suggesting an absence of bronchial hyperactivity.
Static lung volumes, spirometry and gas transfer are within normal range. Examination of inspiratory/expiratory flow volume curve is normal.

I asked him to send me to a pulmonologist as I'm still concerned about my breathing but he refused saying it was not needed. I told him my throat/neck pain has been very bad for several weeks to the point of keeping me from sleep and he prescribed me nitro spray to relax it. If I start to choke or it feels like it is closing up I am supposed to use it. The pharmacist said it was for angina and not for the throat closing/choking.

I was going to his nurse prac. because she will send me for testing or referrals but I think he figured me out because I phoned for an appt. then got a call back saying my case is too complex and she will no longer see me. I don't think that came from her because she has never indicated any problems to me.

I don't think I can continue to see him, he insists there is nothing wrong with me and I really believe the stress of appts. is making me worse. I am such a mess when I leave his office because he gets me so upset and leaves me feeling no hope and he just walks away. If I fire him/quit I may have no options either because doctors aren't taking patients here right now saying there is a shortage. I don't know what to do anymore

Hi Jules,

I am sorry that you have to go through this.

Your respiratory tests don't mean much, mostly if they were done on a relatively good day.

What they check is how much air can go into and out of your lungs, but they don't check how much effort it takes to move this air.

They let you do it three times and choose the best result, so they do not assess if you have fatigue of your muscles during the test.

What they can say is that quite likely you do not have asthma.

The tests you should have (at the least) are MVV (which is similar to the respiratory tests you had but you have to breath in and out as hard and as fast as you can for 30 seconds)-which will not be normal in someone with respiratory muscle involvement. And MIP/MEP which measure your respiratory muscle force against resistance.

Thanks for your response alice md

Just from the conversation with the person doing the lung test I got the impression it was to check for asthma. I explained to my doctor that, despite the test results, I was so weak I could barely walk out of there but he will still not do more. If I ever get to see a specialist I will try and mention further testing.

I had such a bad night last night that I almost went to the hospital but that really does make my anxiety worse so I took my chances at home. One day I will take another chance on the emergency doctors but comments made to me the last time are still too fresh in my mind that I'm just not ready. If I get bad enough I suppose I will have no choice

Thanks again for your response,
jules

Hi Jules,

The ER is probably not the best place to figure out a complicated case.

One time when I was in the ER because of severe abdominal pain, they weren't sure what was going on so the surgeon and internist stood there and argued if they will "watch"me in surgery or in the "IM" ward.

I ended up their dillema, by suggesting that I will watch me at home.

But, don't give up on finding out what is wrong. Your breathing difficulties need to be assessed properly. This will not be done in the ER but in a good pulmonology unit. You don't have asthma and there are many other diseases that you probably don't have, but they need to keep on searching until they find what you do have, not what you don't.

I once told a neurologist that I am fine with the diagnosis of "emotional problems" but after he has sent me for a through respiratory evaluation which showed that there is nothing wrong with my respiratory muscles.