need advice: what to say to the doctor?
 

I have an appointment with my neurologist coming up. He is the area specialist in diagnosing neuromuscular diseases. He doesn't think I have MG because: the blood tests are negative (I've been tested twice for AChR, once each for MuSK and LEMS); the SFEMG is only mildly abnormal; and my worst symptom is weak truncal muscles.

I saw him six months ago, and he only made this next appointment for me because I requested it.

He said the only place he could refer me is Mayo, but he doesn't recommend that. He doesn't think they'll have anything more to say than he does. He thinks that my other tests (serum CK, EMG, and others) rule out other diagnoses, and without a diagnosis, I can't be treated except with Mestinon, since it seems to help. I certainly can't be treated for an autoimmune disease unless there's some evidence I have one.

Here is what I'm thinking of saying:

I need some help here. My life is strongly affected by this disease. No one has offered me anything but Mestinon. Have you discussed my case with your colleagues? Is there some sort of occupational therapist who could help me? Could there be some sort of brace or device that could help me walk? How are new diseases discovered, anyway, if the specialists only diagnose diseases they already know about?

I really don't know what to do next. I live near Providence, Rhode Island.

Thanks.

Abby

If he does not listen to you properly and understand your situation,change him.When i got no satisfaction from a dr.[which by the i paying them to listen to me,i just change him and report him ] regards

Abby,
I wish you well with your appt. It's hard knowing what to do, but you need answers or, at least additional treatment options, if possible.

I know that different people on this forum have had varying experiences at Mayo. Mine was fairly positive. Feel free to PM me if you'd like.

Cate

Stella,

You just posted my experience. I haven't dropped my doctor just yet, because next month, he is ordering up another round of MRIs. I guess to look at the large tissue on my thymus.

But I must ask why do you think you might have MG?

I don't want to drop my doctor, because he's the guy all the other neurologists send their patients to confirm an MG diagnosis before starting treatment. That's how I ended up with him!

I think I have MG because I have fatiguable muscle weakness in my legs, arms, and neck, and especially in my sides and lower back. It comes and goes, is better in the morning and worse in the early evening. My MRIs are normal, and the serum CK test (that shows muscle break-down) is normal. Also, I have Graves' Disease (another autoimmune disease), and I first came down with the MG symptoms after two weeks of taking care of five kids with H1N1--which I never got myself (none of us were immunized--it was before the shots were available). My suspicion is that my immune system over-reacted while fighting off the flu.

I also have a little eye involvement, but it's mild.

Tell me, please, what are your symptoms? Why do you think you have (or might have) MG? I assume your antibodies test was negative. I had two SFEMGs. The first came back borderline, the second mildly abnormal, but my doctor doesn't think they're enough to diagnose me. I say it's because he only tested muscles that at the time were very mildly weak. Now my arms are getting weaker, so I hope for a third SFEMG--and this time, I'm taking myself off the Mestinon for three weeks first! I don't believe this "12-hour" thing. I have quit Mestinon before, and it's three weeks off it before I stop twitching--a side-effect of the Mestinon. So while I know it has a short half-life, I believe that there is some sort of strong residual effect that my doctor doesn't acknowledge, and that may be messing up the test. There is a small study that shows this effect up to two weeks, but my doctor evidently doesn't know about it, or doesn't take it seriously.

Abby

the SFEMG is normal in some people with clinical symptoms of myasthenia.
no matter if it is done in a weak or strong muscle, no matter if you stop mestinon for a zillion years.

among the MG experts there are two schools of thought-

-there are those that think that patients with clearly evident myasthenic symptoms (to the extent that they admitted to the ICU for them) can't have MG if their SFEMG is normal.

-and there are those that think that it is quite possible (even if relatively rare) to have a completely normal SFEMG and have myasthenia.
some are even ready to think that MG can be caused by an abnormality in the muscle itself, without any abnormality in trasmission of the electrical signal.

the bottom line is that if your MG specialist belongs to those that think it is impossible to have MG with a normal SFEMG, he will not change his mind what ever you do, and quite likely your third EMG will be as normal as the first two.

I think you need to find an MG expert that is more ready to think out of the box, and make the diagnosis based on your clinical picture and not just tests.

unfortuantely most aren't and you just haver to keep on searching until you find one.

the analogy to this would be- let's say you have one arm that is shorter then the other, you will never be able to find a proper shirt, but would have to find an excellent tailor that could make one for you making your arm difference barely noticeable. finding such a tailor may be time consuming and require travel, but you would have no choice.

the misconception with the SFEMG is very understandable. it was assumed that what works for most, should work for all. but, unfortunately this is not so. and you ( and I and a few more people around the world) happen to belong to the group of "very unlikely" patients, but we do exist! and deserve the same care of those that fit the book.

alice

Abby, :icon_question:I just read all the other messages which cause of eyes doenst always get done. I found you talking about how you feel the mestinon affects you up to 2 weeks and a small study supporting this. CAn you give me a link to that study? My neuro is throwing out my amazing response to a neostigmine injection test in the neuro optho department at the university as I mention (in all honesty as I do) that I even had better vision the next morn and better breathing than I usually do at first waking. Now it wasnt the same as when the medication was in me those first hours. But she does this. My lung doc got into this arguement with her last week saying maybe I had had a good nites sleep and why just throw out the whole test!!

Anyway If I can show this study to my lung guy he would greatly appreciate it as he is trying to fight her ignorance.

Thank you so. Annie59

Here's a link to the abstract. The study doesn't show that Mestinon affects the patient that long--just that if affects the SFEMG that long! Probably it comes to the same thing, though.

http://onlinelibrary.wiley.com/doi/1...20211/abstract