I had my EMG tests done yesterday and want to say that I am SO thankful that you all forewarned me about the pain. The Reptetitive stim test wasn't that bad but the single fiber was HORRIBLE!!! She inserted the needle into my upper cheek right below the temple. I have always thought my pain tolerence was high but this was almost more than I could stand. I hope I never need that again because right now I think I would refuse it. I cried through the entire test and all the way home. Deser Flower, I think my reaction was very similar to yours!!! Today I am swollen and you can see a small hole where the needle was inserted. When I got up off the table I looked down and saw a white tube about the size of a straw that was covered in blood! At one point she asked me did I want her to stop because she wasn't sure I was going to be able to tolerate it. I couldn't catch my breath and thought I was getting ready to go into a crisis. I asked her how important the results were as far as my treatment goes and she said that they would be helpful but with the pos. antibody it wasn't as important. Annie you had asked me what antibodies had come back pos. The Neuro asked me the same thing and of course I didn't know. I need to find that out. I plan to do some research to find out what the difference is between the 3.

Once again I left without meds. She told me she was just the Neuro who performs the testing and I would have to get my scrip from my Neuro Optho. I looked this morning and realized my appt. with him isn't until Nov. 24. I called his office and left a message to see if I needed to have my appt. moved up or would he go ahead and call in Mestinon since the testing is complete. I don't know if I can make it another 7 weeks without meds. I told her how driving is almost impossible for me with the ptosis and blurry vision and the horrible fatigue. She said she didn't think my fatigue was all MG but felt it was a combination of that plus my blood disorder which also causes fatigue. I talked with her about the weakness in my arms and she didn't seem to think they were being affected much but did say there was weakness in one of my legs. Today I am just sick of this disease and fed up with Drs. who don't get it!!! Sorry for the negative posting but I am so irritated today. My body is exhausted and I can't hardly keep my eyes open today! I am so thankful I have a place like this to vent!!!

Erin I got your message and PM'ed you last night. Hope it went through I felt like I was in some kind of fog.
Kendra

I can't believe they won't let you have the meds yet. I mean what the heck are they waiting for? Even if all the weakness is not from the MG some of it is and that should be all that matters. I have weakness from the MG and from other issues but the mestinon helps BIG time on a lot of the weakness and my vision.. wow I didn't realize just how bad it was until I went back onto the mestinon, call your reg neuro and ask him/her if they would call in a script for you.

I hope they get you on something soon!

I have no idea what they're waiting for either! I called my reg neuro office this morning and a tech called me back. I explained that my tests were finished and I wasn't scheduled to see the Dr. until Nov. 24 and that I wanted to know would he just call the mestinon in. He said it would be the first of the week before the results of the EMG got to them and they would call me as soon as they have them to let me know how the Dr. wants to proceed. I told him they had already called to tell me antibody test was pos and he didn't seem to have an answer for that. I then asked if I should call and get my appt. scheduled for an earlier date. He told me "no just wait until they call me next week." I am stumped. Part of me wonders what it will hurt to schedule an appt. sooner but then the other part of me doesn't want to get on their bad side. I would love to hear everyones thoughts on that.
Kendra

I can't believe that they haven't given you the meds yet with a positive antibody test. I have a horrible suspicion if your EMG comes back normal you may have a fight on your hands to get medication. Unfortunately a lot of neuros will diregard the antibodies if you have a negative EMG. I know its nuts but it I hear it a lot on another forum I'm on. Some neuros will only take the EMG results as they class this as the gold standard, and can not cope when this test comes back negative.

I really hope that this is not the case for you and that the give you the medication you need. Its just crazy that you have been left high and dry.

Im so sorry the test was painful and left you swollen. My forehead swelled really bad and I bruised where the different needles had gone in. Its no fun.

Fingers crossed you get some positive news soon.

Love
Rach

Hey Kendra,

I don't get it either. It was my understanding what neuros find most important is a positive antibody test for a diagnoses. At least that's how it was for me and was started on mestinon the day the tests came back. The other tests followed. I can only imagine your frustration. I know what you mean about not wanting to get on their bad side or rock the boat. Sometimes we are at the mercy of these doctors. He should have those test results right away, so I don't understand why you can't see him sooner. I'm sorry too you had such a terrible time with your tests. Thank God they are behind you. I hope you get the mestinon soon so you can start feeling better. I'll be keeping good thoughts. Hang in there.

Big Hugs,
Pat

Rach,
I hope the EMG doesn't mess things up too. The Neuro who did the test did say the repetitive stim test looked normal. I asked her what does that mean and she said nothing really because you have the anitbody. I am going to be livid if they don't want to give me meds because of the EMG! I had 2 Nueros in there for the single fiber test and kept hearing them say "oh, that's a really good one" Not sure what that means but hopefully it means they saw something that will make them know what is going on. How in the world can they disregard the antibody test when it clearly shows a pos reading? I really think alot of Drs. treat patients as science experiments. During the test yesterday one of the Drs. said to the other that he had gone to the head Neuro to discuss how painful the single fiber test was for the patients. He said he looked at him and said "oh well" He then said he told him you are not the one having it done nor are you the one watching the patients in pain. The other Dr. kind of shushed him and said we'll talk about this later. I am certain that was not something he should have been discussing in front of me but it made me realize that if they don't actually see us they don't have any compassion for us. I am being treated at KU which is a teaching hospital. I sometimes think they are alot more into the actual problem than the patient aspect of it. My mom went there for years for a blood disorder and I can remember her telling me she was so tired of being treated like a study and being poked and prodded on. I understand the importance of teaching but there needs to be a middle ground!
Kendra

To be honest we don't know whats going to happen, so why waste all that valuable energy on worrying! It looks like the person that did the test realises that the fact you test positive for antibodies is the main thing.

As to the two numpties discussing how painful the tests are.....I would like to stick those needles somewhere and do the test! I will leave it up to your imagination.

Your right theres no compassion !

Try not to worry

Love
Rach

I'm sorry for everything you are going through Kendra. Which doctor are you supposed to see on November 24th? If it is your regular Neuro then I don't understand why you have to wait that long to see him since you are already an established patient. If I need to see my Neuro the day that I call him then he sees me that day. That's probably because I already have a MG diagnosis but if you tested positive to the antibody test then I don't know what in the world is the problem with giving you a prescription for Mestinon and letting you start with a small dose to see if you can get some relief from your weakness!

It was a very long time ago that I had my EMG and I remember just how painful it was. Actually I had the EMG before anything else and the Tech is the one who told me that it looks like I had Myasthenia Gravis from the results that she was getting. The neuro followed up with the actual diagnosis a few weeks later I think.

I am praying that things get moving for you, quick, fast and in a hurry so you can get the Mestinon and hopefully get relief real soon.

I know it is hard but hang in there girlie. You have made it this far and you WILL make it until you get your prescription.

Love and Hugs,

Shari

Kendra:

As you know I had the same test done about 2 weeks ago. We probably had the same Dr. do them -- a foreign doctor, possibly from India or Pakistan, female?

It sounds like you got more out of her than I did when I was there. She really refused to tell me anything until she "analyzed" the results. I also was swollen for two days and had some bleeding around the site. Hurt like the dickens and gave me a migraine on top of it. Went home and totally collapsed for the rest of the day.

Anyway, I saw Dr. Whitaker this last Wednesday and he told me the results of the SFEMG were negative. But the first thing he said to me was "Is your regular neuro going to treat you for this or do you want me to?" So, I said, "Are you saying I have MG?" and the answer was yes. Told him I would just as soon get started now since I don't see my regular neuro for about 2 weeks.

I suspect he will do roughly the same for you. By the way, the only positive test I had was the ACHr modulating antibody.

Which of your tests were positive?

Dr. Whitaker should have your results by the end of next week. I would call and ask for an earlier appointment at that time. I hope that it will go as smoothly for you as it did for me this week. Will be praying for you. I understand your frustration and so does everyone else on here. Feel free to rant all you want. We deserve it every once in a while.

Kendra, I think you need to take a deep breath and try to relax. Stress is not going to do you any favors. And rest, since you don't have meds. I know that's easier said than done but try anyway.

I'm sorry you were in so much pain. Did you put a cold compress on the areas? That does help. And Tylenol. I never want to sugar coat it for people who are going to have it. It's painful.

You know how cautious doctors are. These days, some of them don't want to give you any treatments until they know for sure you have a disease. And it can take two hours to analyze the SFEMG. It's not easy. And, no, the person doing the SFEMG is often not the prescribing doctor. It's only in very rare occasions that your regular neuro is the one who does the SFEMG. Most doctors simply don't have time to do both because of high patient load. Can you imagine 3 - 4 hours of your day doing a test and analyzing it for ONE patient, when you have so many more to see?

As far as not having meds yet, if you are getting worse then you need to call your regular neuro, which I hope is not the neuro-ophthalmologist. Was that the person who ordered the SFEMG or was it a regular neuro? An N-O is usually not the one who writes prescriptions for MG! They only deal with the ocular aspect of MG.

The last thing you want to do is to get angry and think of your doctor as the "enemy." There is no way they would want you suffering. If you need to see him sooner then call and ask for an appt. as soon as possible. And ask for those antibody results.

Take this time to really think about the treatment options. Do some research. Be prepared for when you do see your neuro.

I do understand how frustrated you are about feeling so weak and having it interfere with your life. It is not easy. Just hang in there, make the calls and try to let all this soak in. Anger is weird. Sometimes it's not even meant for the person we are directing it at. Sometimes it masquerades as pain from the idea that we have a stupid disease like MG!

Annie