[Geode]

My antibody tests (including MUSK) and EMG's have been negative. The last thing Dr. S wants to try is a muscle biopsy to investigate Tarui disease. I think that's a longshot since my glucose is never low, and has often been just a little bit high.

How inappropriate would it be to ask for a Tensilon test, just to be sure, before doing something as invasive as a muscle biopsy? Is it a very expensive thing? Should I ask about a Mestinon trial instead? Should I keep my mouth shut?
I don't want to offend the doctor and lose his help.

Tatia

[suev]

You are the patient....therefore, you are the boss of your body and of what gets tested and when! However, you are absolutely brilliant to want to not tick off your doc!!

Maybe if you asked if there was anything else that could be ruled in or out before something as invasive (and I'll bet as expensive) as a muscle biopsy. Also, before the any scheduled test, you have the right and should get expense estimates (even if you have good insurance).

[alice md]

My antibody tests (including MUSK) and EMG's have been negative

So have been mine for many years.

The (totally useless) muscle biopsy my neurologist insisted on (and I eventually agreed, when he said he has no way to know how to treat me without it) was the last straw that pushed me from having "respiratory insufficiency" to having "recurrent acute respiratory failure" requiring respiratory support.

Medicine is a clinical profession, not a fishing expedition of more and more tests.

Diagnostic categories and tests are only tools that help physicians achieve the true goal-making their patient's life better and longer.

medications and therapeutic interventions are always a two sided sword, and therefore you want to be on the firmest ground when prescribing (or taking them).

Find a neurologist who takes you seriously, wants to do every thing possible to make you better, someone who can listen and think (out of the box, if need be), and not 'rule out" far fetched diagnosis by various tests.

It's a bad sign, if you feel that talking honestly with your physician about your thoughts and concerns will lead to him being offended and not wanting to help. A physician-patient relationship is about being able to talk about everything and being ready to explore everything that may help.
And this is even more so, when there is so much uncertainty regarding the diagnosis and optimal management.

[AnnieB3]

Tatia, Questions are never inappropriate, even though some doctors don't like them.

A Tensilon test is normally done in a hospital setting these days. Some people can have adverse reactions to them, especially if they have enough acetylcholine to begin with. Or too much, as is the case in some congenital myasthenic syndromes. They can do an Ice Pack test in addition to the Tensilon Test.

They don't make this "routine" but what they should do is take photos before, during and after any tests like that of your face. Sometimes Mestinon is given after basic breathing tests and then after taking Mestinon, if someone has an obvious pulmonary defect.

A muscle biopsy isn't fun. It does hurt, since they cannot numb the muscle. Seriously, I now sort of understand how wounded soldiers must've felt before morphine or other pain killers. If you do have one, it needs to be done in a center of excellence. Do we have those? I don't know where you live but you really have to plan ahead for a muscle biopsy. The specialized ones are only done in a few places. You have the right to know what is going on with your health. It's not normal, whatever it is.

I agree with Alice, if a simple question would upset this doctor then that does not bode well for the patient-doctor relationship in the future! You've been sick for quite awhile now and need some help. Have you been to a pulmonologist or a neuro-ophthalmologist?

I hope you can get answers.

Annie