So I saw the much anticipated MG-expert neuro that local MG'ers have raved about. In my opinion, the guy wasn't the expert I'd been led to believe (although he sees 50-60 MG patients). He told me point-blank MG doesn't cause urinary incontinence, never has pain associated, said that everybody responds to Tensilon (himself & my friend included),... I didn't dare object since I'd be provoking the bear. He wasn't interested in dialogue, cutting me off & demanding brief 'yes' 'no' responses. He laughed at me when I said I've had symptoms periodically since I was a kid, saying, "You have not had MG all your life!" The guy was a jackbutt.

He didn't do an extended muscle fatigability test either. His version lasted under 5 minutes & included checking arm & neck strength, following his finger, rocking once forward then back on toes/heels,... He did sustain the counter pressure for longer than I've experienced with other doctors, and he was much more demanding that I apply every ounce of strength. As a result, I didn't experience the 30-minute delayed 'blue ball muscle fatigability' I've described in another thread. In fact,.. I seemed to gain some of my strength, and even my breathing got easier. This I was not expecting... it didn't last too too long, I'm back on oxygen tonight.

I'm now suspecting that this could be Lambert-Eaton Myasthenic Syndrome (LEMS) rather than MG (keeping in mind I respond to both Mestinon & Tensilon). Also associated with LEMS is postural hypotension which would explain the wide range of blood pressure readings in a short time period (142/99 to 103/31) and corresponding breathing difficulties (especially lying down -- feels like I'm being strangled).

A doctor at the hospital the other day already ran the LEMS-associated VGCC antibody test so I'm waiting on the results. Also, the autoimmune variation of LEMS is associated with the same HLA subtype (HLA-DR3-B8) connected to Autoimmune Polyglandular Syndrome (which I have).

Today's neuro is having me come back Feb 18 for a repetitive stimulation test. Hopefully, that will indicate if this is LEMS. In the meantime, I'll keep my theories away from the doctor's ears since he appears openly hostile to my input. Whatever happens, this guy won't be my permanent neuro. I don't feel the need to pay money for abuse.

In the meantime, I'm terrified of an approaching weakness backlash from having strained so hard today. Breathing is already so compromised and I have felt the depths of the depths of the depths of muscle weakness to the point of near paralysis (moved one finger on keyboard to communicate). I've got a pulmo appt on Thursday so maybe they can get me more answers & help.

What a load of CRP!

And now where have I heard all THAT before....Those EXACT words and that EXACT manner??
(Except the word used in my case was Mestinon as opposed to Tensilon)

You so deserve that good neuro and need one

We have to invent a new test if we can´t change neanderthal attitudes
(I´m sure they would have sensed and accepted it faster than your neuro)

Hoping for your SFEMG to be positive



PS Good advice about no letters from the more experienced ones - keep writing for your own records for time being

Thanks, Anacrusis. I'm a little nervous about it but hopeful.

If I understand correctly, I stand a higher chance of SFEMG registering outside the normal range if I have LEMS vs MG. That's helpful for two reasons:

1) The MG-'expert' neuro said Mestinon does not stay in the system to affect SFEMG results so I shouldn't be off it for more than 24 hours (contradictory to the research study in PubMed(?) indicating Mestinon can affect SFEMG results up to 2 weeks after going off the medication).

2) The neuro's not testing around my eye, he's testing on my arm and/or leg. Per Annie, "Subcutaneous fat of 9 mm (millimeters) can reduce an EMG signal by 80%." I've gained weight this year so I'm not thin. Will my fat do me in? We will see.

But I do have two prospects,.. the VGCC antibody test as well as the upcoming SFEMG. Hopefully, one or the other (or both!) will work out....

A well-hidden tape recorder might've been appropriate.

Seishin, I honestly can't even handle this tonight. I know how you feel. This mistreatment - and UNSCIENTIFIC conclusions - has got to stop.

Pain: A marathon runner's legs fatigue after 25 miles. An MGer's simply fatigue more quickly.

Mestinon/Tensilon working on everyone: Well, no. They would still have side effects or adverse effects of the drugs.

Urinary Incontinence: MG can affect any of the 640 skeletal muscles. One cause of UI is weak muscles.

Need I go on?

He was a controlling jerk. And what you have to know about controlling personalities is that they are essentially insecure. That's right. They can't handle not being right. Ever. Why? It might make them literally fall apart.

Take someone with you to the Pulmy appt. Like a bodyguard. This is horrid to contemplate but, at this point, you need evidence of their unwillingness to help you. And if you haven't gotten ALL of your records from the past couple of months, get them.

I'm so sorry. I'm livid on your behalf.

And what were you just saying, Alice, about doctors being menches? Not in this case.


Annie

Hi there, just to "reassure" you: I really do have MG (I have positive anti achr ánd anti musk, positive EMG and sfEMG, thymushyperplasia and more obvious stuff). I do not however have clear textbook MG.
I do have pain in the muscles (if you're not up to paralizing weakness, still use your muscles, but they get tired very easily, for me it always feels like exercising too much, a.k.a. musclepain).
I did not have a positive reaction on Tensilon.

And, I've also been to the "professor specialist of specialist, god of MG" where I lived. Most of his patients told me to, so I tried.
But it was a failure.

I'm not sure, but I think the urinairy problema can be caused by mg. Directly because the pelvic diaphragm could get weak (I'm not sure if these muscles are involved though!), or indirectly because of medicine, like mestinon is known for it.

So, well, hang in there. There is no such thing as one MG patient. Everyone has different weird stuff.

Thanks, Annie.

At least this time, I didn't let the neuro's behavior overwhelm me or cause too much self-doubt. I feel more confidence in my knowledge (thanks so much to this board!), so it's easier to recognize the neuro's flat-out wrong & being a dink. Usually, I'd go home & cry after the flailing. This time, I complained afterwards but it didn't knock me flat or cause me to question my psyche.

Although this does aggravate financial concerns. Still no income & not able to work. I'd hoped to file the appeal in response to the short-term disability denial, but that has to be placed on the backburner until I have more 'evidence' of an 'actual' health problem. According to test results, I'm not even supposed to have oxygen (the primary physician caved & gave me a one-week prescription to pay out-of-pocket). On paper, I'm just documented as having neck weakness & 'complaining of shortness of breath & generalized muscle weakness' ... not enough to keep me from working. So I'm fine, unless one jumps into my skin for a day to experience what 'fine' feels like....

Thanks, Ravenclaw

I feel pretty confident in the information I presented, so the extent of his 'wrongness' shone through for me. Whether to bother pointing out his error,.. that was the question. He was not of the personality to hear other viewpoints or logic. So I became semi-docile (not like me at ALL!!) and made puppy dog eyes at not getting this diagnosed and treated.

What I start to wonder is this.....

If it can take a number of years to get a diagnosis,

How many more years on top of that does it take people to find a good neuro IF they are seronegative?

Hang in there sweet Seishin this has to work out for you one way or another

Yeah... I wish that 3rd year resident neuro were opening a private practice. He was very compassionate & willing to listen. That's what I want. The neuro wouldn't have to be a know-it-all expert, just demonstrate a willingness to learn, take the time to hear me & work WITH me.

Okay....

Ha! The one I would have chosen would have been the one who lived in another country approx 2,000 km away from my house.

His interest was researching seronegative MG and when I asked if he thought the symptoms were psychosomatic, his response was
And he even spent time explaining why he thought the contrary

Sleep well you need at least that much