Hi Everyone, I'm sorry I haven't posted much. I've been sick and also, I'm feeling more and more like Alice in Wonderland trying to make sense of a crazy world. And then thinking I'm crazy. Anyway, most of you have danced that dance, I'm sure.

So, since I was waiting to see the mg specialists and I already had an appointment I went to see a neurologist in another state who was sort of not-very-heartily-recommended-but-there's-not-much-around-here by the regional mg person. To make a long story short, I was hoping to get a full sf emg but, after two long and very tiring train trips, ended up getting an sf emg done only around my eye. Of course, it showed nothing. I say of course because I've come to accept that none of this is going to come easily for me. I don't know why nothing showed since I've gotten to the point where the whole upper right quadrant of my face is falling down and I look like I've had a stroke. But I did go into this with a "evidence for, not evidence against" sort of attitutde. Not that I'm convinced I have mg (almost though) but I'm not going to be not-convinced until I have some good explanations from a doc that I really have confidence in.

The neurologist also sent me over for some breathing tests which I did think for sure would show something, but showed nothing. That was a shocker. Because I was definitely having trouble breathing at that moment and I definitely have a lot of trouble breathing in general. I thought about it and thought about it (I know I sound like Winnie-the-Pooh and probably looked like it too ) and finally ended up getting a copy of the spirometry that was done when I was on mestinon and feeling great. Lo and behold, my normal numbers are way above the predicted numbers (122% on the one the neurologist was zeroing in on). So, for all you math geeks out there, I looked it up and the predicted values are based on a regression line and a normal curve of data. The bottom line is that my breathing would have to go down to 67% of my capacity before I would even begin to register as having any problems with my breathing. I'm still scratching my head over that test. I don't understand why they would use a standard which would guarantee that half the population would have their lung function overestimated and half would be underestimated. Maybe someone could explain it to me. Maybe it actually makes more sense than I can see from here.

Anyway, this is where it gets interested. The neuro said the 1 sf emg trumped the 2 positive antibody tests and, by the way, I can breath just fine and anyway mg symptoms don't wax and wane and mine do. So I decided that I would have to try to gather every single bit of evidence that I can't breath, I'm weak, my eyes are weak, everything. Some of it I can't prove, some of it maybe I can. So, along this line, I ordered an all night oxygen saturation meter because I was hoping to document that I suffocate all night long. And it worked!!! Oh my gosh, I was so excited! I got graphs and data showing my 02 saturation level falling to 68 at one point, in the 70's a dozen times and many, many times dropping to the low 80's, me struggling to wake up and breath and finally, about 45 seconds later pulling myself into the low 90's.

So, I took the graphs and reports to a neurologist who is a sleep specialists. I was bracing myself because so many times before I've gone into doctor's offices with a "see, I have positive antibodies!" type of evidence only to be shut down in short order. But this time the doctor was really surprised. He verified that, yes, that's bad. Here's the funny, sort of Alice In Wonderland thing: he could see my eye drooping and I told him about the antibodies and he kept saying, "I just don't understand why they haven't given you a firm diagnosis" and "it shouldn't be that hard, you have a drooping eye and positive antibodies". Of course I didn't have a good answer and it got to the point where I felt like he was irritated because I couldn't give him a good explanation as to why I hadn't been diagnosed! Ha! Someday I'll laugh about this. Actually, I'm laughing now. Life is so strange!

The good news is that he's going to work with me on this. I have a sleep study next week and then he's going to work with me to get a machine so I can at least stop suffocating at night. He explained something to me which I didn't know which is that we have a lot of muscles helping us breath even in sleep, except during REM where only the diaphragm is in use. I looked up some studies on mg and sleep apnea and sure enough found a study where 60% of myasthenics had sleep apnea during REM for just this reason. The problem is that I don't think you can differentiate between an mg cause and a normal case although maybe the sat. levels being so wacky can help. Does anyone have any experience with this?

So, I have a sleep neuro who thinks I have mg who is going to support my breathing with expensive machines (he mentioned an assisted breathing machine that costs $10,000!!!) when probably some all night mestinon and some prednisone would help more, but who can't otherwise help to diagnose me except to encourage me to see an mg specialist. Then I have neuros who could diagnose me but don't think I have mg. Meanwhile I'm wondering if this is all going to end in disaster before I can get to see a specialist.

I just really want to be told yes or no by a doctor I really have confidence in. And given an answer as to why I tested positive because if I don't have mg, I surely have something, and maybe the antibodies should point me to another autoimmune disease.

Sorry this is so long!!! I hoped to keep it short but I couldn't do it. I've been following everyone's stories and I'm sorry I haven't been commenting but I have been thinking of everyone.

Ally

Good Lord! You have had a miserable time with this stupid MG thing!

I still do not know why it is so flippin hard to get dx'ed for some people - I mean they literally have to be knocking on Heaven's door in order to be dx'ed!

Compared to a lot of people I had it ez to get dx'ed...but was so weak @ the time that I was unable to do anything......scary stuff!

Hopefully you will get a SOLID dx soon and get all of this crazy stuff under control.........you certainly DESERVE it!

My thoughts and prayers are with you!
Erin

life does stink somedays ,weeks,monthsand years.i hope you're near a university health center. sometimes they have the better docs.sometimes the visits take awhile due to teaching which happens occ. but that's how docs learn. your positive attitude is what holds you together. but let yourself get angry, grieve for what is lost but remember what you may learn. try to worry for 20 mins. then put them into a basket[real or imaginery] i write my thoughts down and scan when depressed and realize how much moe i have learned and throw the old ones away!!!!

Hi Erin!
Thanks for yur encouragement. I think I'm having a hard time getting a dx because I'm not strongly affected in the limbs. If they had a "try to get some vacuuming done" or "try to style your hair with a heavy blow dryer" test I'd have been diagnosed immediately! Mostly I think it effects my breathing muscles though. My sats were down three times to the low 60's last night so hopefully that will be some evidence.

I'm glad you finally got diagnosed. But you went through a nightmare before you got one. So glad you hung in there!!!

X-mas: that's good advice about putting your worries into a basket. I need to do that more and just set them aside except for when I really look at them from a "is there anything I could do about this" sort of perspective.

Thanks for your reply. I'm so touched that people take time out of their own lives to read about mine. You guys are great!

Hi Ally,
Sorry to have to tell you this, but sometimes the dx is given, then taken back, then given, then questioned over and over - especially when there is something overlapping to confuse things. That's what happens with me. The problem is that other diseases can cause many of the same symptoms as MG - weakness, breathing difficulty, etc.

I was amazed at all of them once my new neuro started looking at everything again and I started researching what she was looking at. I personally don't have any doubt about my MG dx (based on RNS and positive Tensilon), but I am anti-body negative.

With you testing postive for the anti bodies, I'm not sure what the issue is either. I can't wait until you see the MG specialist, but make sure you don't smoke for 24 hrs before, drink coffee for at least 4 hrs before, or take your Mestinon for 24 hrs before any EMG, SFEMG, or RNS tests. I had normal EMGs all but the one I was dx'd on. That was the one I didn't have any of the above because I was in the hospital and the test was so early that I hadn't had any coffee yet.

The neuro you saw in the other state is questionable, since he said that MG doesn't fluctuate! WHAT?? They do, day to day, even hour to hour! Neuros that deal with MG know that! That's why I get frustrated when they have you set an appt that is a month out, you walk in having a "good day", and they say you're not weak enough to have MG.

I do want to caution you though, about seeing a doc that isn't a specialist in MG. Their notes become a part of your medical history, right or wrong in their dx, it's still there. That can create more problems for you, because they seem to feel that can mean you're jumping around trying to find someone that will tell you what you WANT to hear (like anyone WANTS to have MG!!!!). They don't seem to understand the frustration of not having a firm dx, and start looking a psychologic reasons for the symptoms.

I hope I have worded this well enough for you to understand that I know very well why you are trying to find someone to help you sooner, it's just a warning about how the medical community may view it.

I'm glad you have found an advocate in the sleep specialist. Hopefully that will get things moving a little more smoothly for you.

I can feel for what you are doing, cos thats what I'm doing too! I'm weak in my limbs but as my eyelids aren't drooping a lot, or when I'm visiting my neuro its not drooping, so they have ruled out MG. And all they do is monitor with bare hands, meaning no tests or anything. So far I've only done EMG and am still waiting on my blood test results. Its impossible to order tests for myself where I am, unless a doctor prescribes it so am glad you got in the right direction!

All the best to your diagnosis, keep us updated!

Connie: I'm so surprised they're not doing more to move along a diagnosis for you. When I read your story (My Journey) I thought to myself, "well now she has much more typical symptoms of weakness and limb problems, she probably won't have much difficulty getting a diagnosis". So, I'm sorry to hear that they just have a wait and see attitude with you. I'd like to see these doctors go through these problems and sit back and wait and see what happens! It's such a ridiculous way of thinking, "your life will go by and go by and you will be scared to death and miss so much, but just relax and we'll see what happens". Huh?

I'm eager to see how your bloodwork comes back (I'm sure you are too!). I wonder if a positive blood test will motivate them (it hasn't helped me, but then nothing much shows up in the way of limb weakness with those 5 minute neurological exams).

Thanks for replying and encouraging me. I'm going to be following your story very closely!

WTH?!? I just do not get it! Why do we have to get so sick b/4 we are treated? When I first found this forum, a girl on here was so weak that she on a FEEDING/BREATHING tubes and still could not find an answer - and she was a nurse!

Granted, she no longer posts so I hope she was dx'ed and taken care of, but it is just wrong! We are made to believe that WE are crazy - we are SICK! We cannot take care of our families/ourselves and feel guilty enough about it without some snot nosed dr telling us we aren't ill.........

I went through years of being ill before I was dx'ed - and then it was almost too late! No one should have to suffer like that!

I'm sorry for venting - I just do not understand........


Erin

I agree Erin, the suffering goes on way to long, before a doctor will take a chance of giving a diagnosis. There are so many illnesses with the same presenting symptoms though, then there are the overlaps, makes my head spin !
It's very sad,
Mary

Well put, Erin!!!