A good neuro is worth everything. Glad you can move forward with treatment.

Please read about preparing for EMGs in the Links group. I was inadequately prepared and those rooms are COLD!

http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14341733

Wishing you and your daughter good experiences to continue, b.

p.s. atropine is usually used as an adjunct when doing the Tensilon test, so that the other effects of edrophonium (Tensilon) are not evident. The use of atropine is two fold, one the side effects of edrophonium can be uncomfortable (as we know who take Mestinon) and it also lets the person who is getting the injection know they are getting the active ingredient as opposed to placebo. Sometimes both placebo and edrophonium are given. b.

I will have to ask him tomorrow if he gave her anything other than atropine. I just know they had to wait for the pharmacy to send it down. She has had one EMG but I'm not sure how different the SFEMG is. I can tell you she is not looking forward to it.

Please let your daughter know the SFEMG is not bad. It is totally different from the EMG. A small needle is inserted just beneath the skin. Their is a slight pain but nothing like the shock of the EMG.

I saw Dr. Howard for a consult. He does have an excellent bed side manner and does take time to answer any question. By the way he was one of the primary authors for the MGFA "MG, A Manual for the Health Care Provider". He signed my copy.

Wishing you and your daughter the best.

Bruce

Having a diagnosis means that treatment can get underway. Sorry for the MG, but good to know what is wrong.
Good Luck

I am so sorry to hear about your daughter's diagnosis. I am thrilled however to hear of your experience with Dr. Howard. He was my neuro's mentor during his 2 year fellowship at UNC. Dr. Michael Lui is his name. Maybe you could mention his name tomorrow and share what he has to say about him with me. (Obviously, don't take anything away from your daughter's care and testing but it you get the chance to mention it...)

From what Dr. Lui has to say about Dr. Howard he is a wonderful doctor with a lot of heart. He deeply cares for his patients and has done tons of research and work in the MG world. I didn't realize that so many on this site were familiar with him. It good to know.

I think that your daughter couldn't be in better hands. I will keep her in my thoughts. This has to be incredibly scarey for such a young lady.

Hugs to you and your daughter.
Angie

P.S. Do you live in NC? I know that Dr. Lui mentioned that they saw patient's from all over the country so that's why I'm curious.

So happy you have a diagnoses and medication that is helping!
I know as a mother how hard it is to have a child undiagnosed.
Good luck with the next testing and hope it goes well.

I hope someone can answer my next question.
I feel a bit confused.
I thought atropine was given in cholinergic crises so I thought it did the opposite of pyridostigmine. Why then did the atropine cause symptoms to dissapear? I would think it would make her weaker.
I must be missing something. Marie

I hope for the best as well. I have not had an EMG, but my neuro keeps asking if I want one. I guess it would give me a baseline for my muscle weakness??? Or does it help in diagnosis??? If it is just the diagnosis part, I don't need it hopefully. I have a hear (a-fib) issue and don't want electrical signals sent through my muscles.

Sherri~ I have not had the SFEMG. Dr. Lui does not do these studies either in fact to my knowledge nobody in the state of Hawaii does. I wish that I could give you more information on it. Good luck to you and your daughter tomorrow.

007dan~ EMG studies can be useful for diagnosing MG and for ruling out other conditions.

Many people are afraid of the NCS/EMG study and depending on your pain tolerance or fear of needles you may feel the same.

To explain the procedure this is what I tell our patients before beginning the test.

Different electrodes are placed in specific areas and stimulate the nerve with an electrical current. It starts out like a vibration and will gradually get stronger. Next is the muscle testing. We will use a very thin needle to reach the surface of the muscle. There is no electrical current used during this part. We will ask you to activate your muscles by moving them in a certain directions and we will be checking several different muscle during that time.

That is basically how it works. It may be slightly different depending on the machine and the technician/doctor performing the test and based on how thorough the study is.

I have a pretty high tolerance for pain and absolutely no fear of needles. I've been known to draw my own blood when others fail to do so. I've had to give myself EpiPen injections before as well. These types of things don't bother me at all but they bother many people. I encourage you to watch the u-tube videos that others have mentioned on here as well as the link for how to prepare for an EMG.

When blood tests are negative sometimes the only way to detect MG is by EMG but they are notoriously unreliable too. Even doing the repetitive stimulation may not show it. The most accurate way to detect MG is the single fiber EMG. Between testing out our EMG machine and my own rep stim EMG for MG I have been through it a number of times but I'm sure most members of DS have also.

I hope this information is helpful. Please ask as many questions as you need to. We are all here to help and support you. Please keep us updated as they happen.

Wishing you and your daughter all the best. Sounds like you are on the right path with your neuro.
Take care,
Larissa

Marie,
You are right. Tensilon and Mestinon have more than one effect when they interfere with the breakdown of acetylcholine. We know all about what Mestinon can do to our gut, which is a function of the drug; we call it a side effect when it is not wanted. Atropine blocks those effects. Tensilon is more intense and sometimes atropine is given just for the test. As I said before, the purpose is two fold, one to make the test more comfortable and two to blind the patient as to when they are getting the edrophonium (Tensilon) and when it is placebo--when they do the test. It is not always used. I do not know why it was used in this case. b.

Okay we saw Dr. Howard today. Sorry Angie I didn't read your post until after the appointment. Anyway, I'm not sure what he did with the atropine but he told me today that one shot was saline and one shot was Tensilon (possibly mixed with atropine ???) I just know they were waiting for the atropine before they injected her. They said they use one to try to prevent the patient from faking. The SF EMG and the repetitive nerve test they did today will be studied along with the the antibody tests to determine how we should approach the disease with the ultimate goal of remission. I should find that out in a couple of weeks.

Sherri ~
It is okay. It is more important that you get the answers for your daughter's care. It was just if you got the chance and no big deal at all.
I have had the rep stim done on myself and it isn't particularly fun so I'm wondering how your daughter did through the tests today? I know that test wore me out for about 2 days so keep a good eye on her because she may need even more help than normal.

I'm glad that you are getting answers though and I wish her (and you) good health and peace for the future.

Sherri I am so glad that you found Dr. Howard! I am wondering if on the link page we have a list of drs that people have found extremely helpful. I am wondering if there is one in the New England area for our daughter. (Vermont/NH area) Due to extreme weakness she cannot travel far.

Thanks too B for clarifying about the atropine. I am a bit sleep deprived as we have not been able to fine tune BIPAP since the myotomy and putting 2+2 together lately I am sometimes coming up with 3....sigh

I am just really excited about Sherri's daughter getting help so early.
IT is how things should happen and I think all here rejoice when things go as they should.Makes me smile to know she is getting the help she needs. Please keep us posted Sherri.

Also I appreciated the link about the EMG testing. I know when I was tested I remained on Mestinon and no muscle was exercised first and no one asked which one was weaker not was the room warm.

This is where this forum really is so helpful! Marie