Ok... so another realization possibly.. Does heat make Myasthenia worse for yall?? The last few days I have gotten out of the shower and just been SOO weak and just felt awful, slurred speech more etc etc.. My husband just kept saying, you have been saying that for months , that hot showers makes you worse.. I guess I just am so run down by this all that I haven't added any of this together.. Does that make it worse usually? Ok , sorry for asking so many questions!!!!

The symptoms you just mentioned are classic. For example people can't tell I am smiling because my lips are straight line. My niece actually got mad at me because I did not smile at one of her jokes. My sisters left side of her face sags as the day goes on. As for the heat that always affects me. For me it is more the hot sun than the shower. The way I discovered that was a 30 minute boat ride. Thought I was in store for a trip to the ER. My blood panels went to Mayo, it takes a little longer but I trust them more than local labs. My first test was neg but the second one 4 months later was positive for binding but by then I was already being treated. My neuro-opto said he didn't really care what the first blood work showed, he was positive I had MG.
Good Luck
Mike

Pingpongman- That is exactly how my face/smile is! We were at my work party last night and I felt like people were going to think I was mad, I just couldn't smile or make the "laughing face"!
Does your fatigue vary from day to day- I know there are some days for me where I can laugh/smile for a bit and be ok, and other days where I can't even make the expression at all..

Also, are eyelids NOT closing all the way at night a symptom of MG?? When this all started my first symptom I noticed was waking up with red irritated dry eyes, I noticed my vision seemed double at times, and at the same time I noticed the shape of my eyelids had just changed.. I thought it was odd, but chalked it up to being tired with a newborn and hitting hitting 31 years old! Anyhow, turns out my eyelids aren't closing all the way at night. is that normal for MG??


As far as labs go, you say there was a lab for binding? is that an antibody test as well? I have never mounted antibodies (at least in all the labs I have had in the past 10 years, all my antibodies are negative, despite having had the illness or vaccine) So i don't know how accurate antibody testing is for me.. is the Musk test an antibody? are there any non antibody tests for MG? Thanks again! Hope all is well! (btw, what is your treatment, just mestion? or did you do IVIG?) Thanks!

I just want to say that in my totally amateur opinion--I'm just another MG patient who likes to read about the disease--it sure sounds like MG is a big possibility. The hallmark of MG is the fatiguability you describe. I went through something similar: a big work-up with all these experts, and their consensus was "we're baffled." I tested negative for the antibodies (three times). My first two SFEMGs were non-conclusive.

In the end, after 15 months, I got a diagnosis from a different neurologist that my own neurologists sent me to. Try to see if they'll refer you to a neuro-ophthalmologist! Many of us have gotten answers there that we couldn't get anywhere else. Ask them if there's an MG expert you can see--you may have to travel. If they can't give you a diagnosis, they should be able to recommend someone who can.

Here's another thing: the IVIG trial is a good idea. If it works, it will at least show that you have an autoimmune disease. The treatments for MG (Imuran, Cellcept, Prednisone, etc.) are also used for other autoimmune diseases. I have this half-rational fear of coming down with rheumatoid arthritis (hey, is it normal for my age (46) to start getting lumpy finger-joints?) and it's reassuring to know that the treatment for RA is the same as the treatment I'm already getting for MG. Just remember that, like the typical MG patient, being cold makes you better and being warm makes you worse. If you have a SFEMG, make sure you're warm for it.

One more thing to keep in mind: if you do have IVIG, and if it only gives you a small improvement--one that doesn't quite convince you it's working--don't hesitate to try it twice. Many of us didn't get great results for the first one or two, but then got really dramatic results for the second or third time.

Abby

My weakness issues started for me shortly after childbirth, too. And like you, at first I chalked it up to being a new parent. Did you have an uneventful delivery? My daughter expelled meconium before delivery, and I had an emergency c-section. I've wondered what may have acted as a trigger.

I also have a lot of fasciculations, but they are not continuous like in Isaac's. They jump around in random places as well.

Tatia

Stress (physical and emotional) can trigger autoimmune diseases, but childbirth is a special case. My understanding is that when you have a baby--whether by C-Section or not--you're especially prone to infection. Your body responds by creating all sorts of antibodies to protect you. This heightened state of the immune system (I know this is vague) makes certain people prone to developing an autoimmune disease. I came down with Graves' after the birth of one of my children, and I'm told that's quite common.

Abby

I don't think I have the eyelid problem except for the droop.

I had double vision for about one year. It is now gone. PRAISE THE LORD!!! I started on Mestinon then Mestinon+Steroids then Mestinon+Imuran (1 year). The Imuran really made me sick. I lost 35 pounds. During that year I was also on IVIG about every 2 months. As Abby says mine helped about every other time. I am currently on Mestinon+Cellcept+Steroids and MAYBE IVIG if needed. I feel better than I have felt in a year.

Keep in mind what works for one person might not work for another. I call it a Neuro's "Witch Brew". I take my wife along to all my appts so I don't forget anything. We try to tell him about all my problems.

Hang in there, this crazy thing takes time to find the right treatment.
Mike

Thank yall so much for taking the time to reply, it really means a lot to me and yall are really making me feel better about this whole thing!

Abby- wow, 15 months of feeling bad with no answers, that would be rough! It's been about four, well more than that of not feeling well, since I Had a preceeding illness/event, but about four since the major neuro symptoms started, and I'm irritated we don't have an answer and treatment started all ready.. so how did they end up diagnosing you? Did you ever get positive bloodwork or SFEMG? or was it just by exam? I'm SOOO excited to try the IVIG, I just hope it works, since I am just so ready to know that there is SOMETHING that can help me!!! Thanks for the advice about maybe needing to try it a couple of times!

Geode- I had an extremely eventful delivery and following events unfortunately! I was a scheduled c section (high risk pregnancy on heparin with a large baby, plus prior c section only 16 months before!), But the epidural went bad- they almost had to intubate me and my blood pressure crashed, so they had to give me a bunch of drugs to increase that and my heart rate, My breathing was compromised (i barely remember my son being born- i was on high flow oxygen), and my arms were so paralyzed that I coudln't even move them to hold him.. it wasn't fun!!
at 6 weeks post partum I was jogging feeling great!
And then about 7 weeks later I got sick with coxsachie virus- really sick with a 103.5 fever, body aches, and all the blisters that go along with it - fun! a week later I had an IUD put in, and they perforated me, so I walked around for a week feeling AWFUL before going to the hospital and I had been bleeding internally, and had to get blood transfusions and was in the hospital for four days - haha, sooooo I would say there were a few stressors in that couple of months! I came out of the hospital and felt sooo weak, thinking it was just my anemia, but once my numbers returned to normal I was still so weak I could barely put one leg in front of the other.. thats when I noticed my eyes changed shape and weren't closing at night... etc etc.. and here we are! :0!
Abby - I thought I had post partum graves- I thought my eyes were dry and eyelids changed shape because I thought My eyes were protruding from that, but we kept checking my thyroid and it was normal everytime!
Mike- thanks, its good to know that it may take a special "cocktail" to get the right fit! They kept thinking I had CIDP, which people have to do IVIG pretty frequently, So whatever it takes to help me feel better I am game!!!!

Are any of yall Musk positive???

Do any of yall have slurred speech at the end of the day or after talking a bit? i think that's what scares me the most! I did a test on myself today, just out of curiousity (thanks to exploring good ol dr google) and I stood up from sitting position (it said to do it 20 times, then rest to see if better), I could BARELY do it four times, my muscles just plum couldn't do it anymore, crazy! I used to be in shape!!!
Oh, and after a hot shower today, I did notice my right eyelid was droopier than before I got in the shower.. interesting stuff now that I"m paying attention to it!
Do yall know if there is any other testing besides antibody testing as far as bloodwork goes?
Thank yall again, and I appologize I ask so many questions!!!

As for the blood work as far as I know they just test the antibodies musk, binding and modulating. Any more blood work after a positive is really meaningless and the actual numbers don't really mean much as far as how severe your MG is.
A neat little test you can do is when your eye is drooping real bad try a small plastic bag of crushed ice on it for about 1 minute. If it opens up then that is a sign of MG. Another test they do is hold their finger above your droopy eye and make you stare at it and in a short period it will droop even more. I had one doctor do that till my eye almost closed.
Just hang in there!
Mike

My third SFEMG seemed conclusive to the neurologist who did it (a different neuro did the first two). I was hard to diagnose because not only did my blood test negative three times, but my symptoms are atypical! I have hardly any eye involvement, and for the first year or so, my main symptom was a weakness in the muscles in my sides, so that I lose my balance easily. I start tipping from the waist up, and then I have to take a step to the side to catch myself. Now I also have more typical symptoms in my arms and legs and neck.

I think there is still some doubt over my diagnosis, but the last round of IVIG had me feeling so good for six weeks that I'm convinced that at the very least it's an autoimmune disease (and not, for example, a congenital myasthenic syndrome). I'm on Imuran, which doesn't seem to be helping. Mestinon doesn't seem to do much for me. I am choosing to avoid Prednisone for now, because my symptoms are relatively mild.

Abby