Focal Weakness anyone?
 

I am currently in diagnostic limbo, going to the university specialists this week. Anyhow, I was curious if anyone with MG here has focal muscle weakness? I have periods of time where I can't hardly smile and if i smile or laugh, my face simply won't have the ability to smile, laugh or make the "crying" face for a while afterwards.. the muscles almost tremble with exhaustion for a while.. same goes with the rest of my body.. however I also have constant weakness in my tips of all fingers and entire thumbs.. it's been constant for almost 3 months now.. I have a triple furrowed tonge, slurred speech and swallowing feels difficult- all at the end of the day or after talking a lot. My initial MG serum panel came back negative- though that didn't include MusK (plus I have never mounted antibodies in my blood my entire life- found this out for vaccination purposes). Anyhow, any insight/experiences would be greatly appreciated!

As for the blood panel, you will find a lot of people here have NEVER tested positive. My first panel was negative but 6 months later was positive. I think the lack of ability to smile is a classic symptom. That was one of the test my neuro-muscular doctor always gave me. My sister has a horrible droopy face at the end of the day. (won't go to doctor) I don't recall hearing about the numbness in finger tips or the tongue thing but the rest seem to be classic symptoms.
Mike

I have the furrowed tongue with scallopped edges (definitely symptomatic of MG). I have tingling and sensory loss and extreme cold sensitivity in my fingers, and some weakness--probably Reynauds combined with MG. We often have other autoimmune things going on with MG. I am seronegative as well. I agree with pingpongman that the rest sounds like the classic presentation of MG, which should help with diagnosis, my initial findings were not classic, but with time . . . b.

Your symptoms (except for the fingers) sound like MG. I'm still neg for antibodies - but could be a clinical MG show and tell for med students!! Luckily my neuro is one that believes 'if it walks like a duck and talks like a duck...it's probably a duck' and is treating me for MG.

Thank yall all so very much for your replies! I really appreciate it!
Did any of yall have focal weakness- consistent muscle weakness in one place? I have all over muscle fatique/shakiness but this finger weakness thing erks me even more
How did yall get diagnosed? clinical only? Single fiber EMG? Tensilon test? I have my university neuromuscular appointment in only 3 days - i am NERVOUS of a really scarey diagnosis.. but I am only 31 years old, female and post partu after some physically traumatic stressors (procedure gone bad= blood transfusions, and some GI issues that followed) but at times my whole body is so weak i can barely put one foot in front of the other.. other times i'm better! Did yall just take mestinon (sp?) or anyone try IVIG? Thanks again,and sorry for so many questions!!! I'm just nervous!

Welcome to the group. We understand what you're going through!

I'm going to try to do a summary of the typical diagnoses and treatment around here. It's just based on my impressions from reading this board for about a year and a half. I'm trying to give you a sort of lay of the land.

The majority of people who post here were diagnosed by blood tests. Of those, the majority are AChR-antibodies positive, but we have a handful of MuSK people, too. I can't remember any LEMS people since I've been here. But a significant number of us (including me) have never tested positive with antibody tests. Of us sero-negative people who are diagnosed, most of us were diagnosed on the basis of a SFEMG. I'm not sure if we have anyone here with negative blood tests and a "normal" SFEMG who is diagnosed based just on symptoms, but we might. It isn't unheard of.

I've noticed that quite a few of us who were having trouble getting a diagnosis finally got one from a neurophthalmologist, even if, as in my case, eye symptoms were mild.

I'm pretty sure all of us have tried Mestinon. It's considered a safe drug, so many neuros are willing to prescribe it if they suspect MG, even before they do any testing. Mestinon helps the majority of us, but not all of us (including me). A few people can't tolerate the side effects (mostly GI), but most people don't have trouble with that.

IVIG seems to help the majority (are you noticing a pattern here?) of the people who try it, though some of us find it didn't help much the first time or two. IVIG is very expensive and cumbersome, so it's used in emergencies (when someone's having trouble breathing or swallowing) or for people with severe symptoms that can't be managed in other ways. A good number of people here have IVIG regularly, usually every six weeks. There are a few people here who need IVIG but who can't have it because they don't have insurance, which is heart-breaking.

An alternative to IVIG is plasmapheresis.

Most people here are on some combination of Mestinon, steroids (Prednisone), immunosuppressants (Imuran, Cellcept) and IVIG. We have one member who had a very radical treatment (someone tell me if I get this wrong): chemotherapy to completely destroy her immune system and then drugs to stimulate it. The idea is to "reboot" the immune system in the hopes that when it starts up again, it will forget it was attacking the neuromuscular junctions. This is, of course, a dangerous and traumatic treatment, but for her it was very successful. I think it wouldn't be attempted unless the disease were severe and refractory (resistant to all other treatments).

I hope you get some answers soon. If you're like me, you'll find the actual disease easier to handle when you're not dealing with all the not-knowing at the same time.

Abby

I had all the tests...NCV, EMG, SFEMG, (all nerve tests) AChR and MUSK antibodies, VCC, complete thryroid panel, etc. (bloodwork). Then there was a CT scan (abdomen and thoracic cavity), MRI of brain and upper spinal column, and an EEG (the last one I never understood), and a pulmonary function test.

I have to say I was getting really worried there for a while! All that and everything came back fine except for EMG/SFEMG that were abnormal but not in the 'fail' range.

So my neuro tried an in office dose of Mestinon...to which I responded beautifully...and voila!! You have MG.

Stellatum - wow thanks that was a GREAT explanation!!! and suev, I really appreciate both of yalls replies!!! Only one more day until my appointment on wednesday and I'm NERVOUS...

I have one seriously bad fear, though my story and age dont' fit well with it - i have fasiculations, muscle wasting diffusely and mouth tongue involvement , and thats ALS.. i'm absolutely terrified.. but from what I can find online (aka dr google, which I know isn't a good idea for me to be searching online, but i'm a medical mystery to the dr's and the first doc mentioned it as a possibility , others have said they don't think it's likely, two clean emgs, which is strange)

But then I also have the double vision at night when tired, eyelid thing and just diffuse muscle weakness that started all at once.. they thought maybe cidp.. but 2nd emg discounted that and i have normal reflexes.. I then came across the triple furrowed tongue thing... which is my tongue exactly!! I can't find any other disorder besides MG musk that explains a triple furrowed tongue, I have had the fasiculations for over three years.. so that might not be related at all.. ugh.. I'm beyond nervous, but I can't tell yall how much I appreciate yalls time and replies.. I will be makimg sure they also consider an atypical MG presentation along with everything else too.. ya never know!!

One thing I didn't say before is that it took a GP, a rheumy, a cardiologist, an oncologist, two neuros and about 1.5 years for me to find the right neuro and get my dx. My symptoms were real - but vague - and I have a very thorough GP.

The point is I don't want you to get discouraged if things don't move rapidly. (And my first neuro referred me to an ALS clinic...which scared the xxxxx out of me! I responded by finding a new neuro of my choice!! And lucky for me, I got a really good one on the second go.)

Pls let us know how it goes...will be thinking of you.

sounds familiar. i had the same amount of doctors just took a little longer. one thing about all my doctors is that they werent trying to send me to specialty clinics like that they were saying that my symptoms were things like asthma or allergic reactions to food. i finally got the right guess (because thats what it was) from a ear nose and throat doctor that had never heard about myasthenia until a week before i came into his practice when he was reading a medical magazine. if it werent for that strange coincidence idk if i would still be undiagnosed.

suev- wow, It seems like I read about a lot of people that take a while to get a diagnosis.. the limbo time/unkown is not fun! The dr i'm seeing at UTSW tomorrow is at the ALS clinic, looks like she also specializes in other things like MG, and polyneuropathies.. So, I'm hoping that we can find an answer- ANY answer besides a motor neuron dz! I think/ I know i'll be a nervous wreck tomorrow before and during the appointment!
I have seen 3 neuros, a physiatrist, my GP and my GI/Internal med dr, and still am a medical mystery! Neurology is so subjective, so I can see why it takes multiple opionions and tests to find answers, and it makes it hard as a patient to have so many subjective exams too, I think!
I'll keep yall updated, and again thank you so very much for your replies, I REALLY appreciate your time!

brandonc- wow, Good thing for that magazine!! I've never even thought about getting second/third opinions on anything my whole life until this, but that's a prime example of why- it just takes one person to have a lightbulb go off and get a diagnosis!

VGKC antibodies
 

Have you ever been tested for VGKC antibodies (antibodies to voltage-gated potassium channels)? Those are associated with Isaac's syndrome, a disorder involving fasciculations. Patients with VGKC antibodies may have associated myasthenia gravis with or without AChR antibodies. This is not the same thing as VGCC antibodies (voltage-gated calcium channel antibodies) which are associated with LEMS.

http://www.pnseuronet.org/vgkc.php

This link describes the association of VGKC antibodies, Isaac's, and MG. It makes it look like they have to test your brain tissue, but don't worry, Athena diagnostics has a blood test for VGKC ab.

Tatia

I have focal weakness! My right eye, which was one of the issues that lead me to pursue what was wrong with me, blurs constantly and will only focus alone. I have also had the issue of my eyes shifting back and forth rapidly, like they are vibrating, making texting on my phone an issue. I can literally feel them bouncing back & forth and trying to focus, like a camera lens that can't find it's target. While I have very poor vision anyways and am severely myopic, this is very different and new. I also find I have more problems going near to far & back.

For my dx I had AChR binding first, but it was negative. Two months later a new dr ran that same test and it was positive. They also ran the modulating, blocking, MuSK, LEMS, and a calcium-channel voltage blocker (or something close to that). They did the nerve stimulation test, but it showed nothing. CT scan too, but I haven't heard those results yet. My doctor said, point blank, that he was dxing me based on "your physical exam, your AChR, and your story."

Thank yall so much for your replies, i really appreciate it!

Geod- Funny you mention Isaacs, I have it on my list for tomorrow (my university neurmuscular specialist appointment) to ask about getting tested for.. From what I understand it can affect your tongue as well. Thanks so much for the info, that is really interesting that there is a relationship between that and MG too!

Kage12- Thanks! That's interesting that they repeated the test and it was positive the second time around.. I guess the Musk labs aren't in the typical MG panel- my labs were run by Quest, not sure how much confidence I have in them, I have had a few bad experiences. When you say they diagnosed you from your physical and story too, how dramatic is the weakness with effort and then how dramatic is the improvement with rest.. do you feel totally normal after resting for a few minutes, or do you always feel kind of weak and then its just worsened by activity and never goes away completely?
Thanks again so much for yalls time! I'll update yall after my appointment tomorrow, i'm SOOOO nervous!

Been thinking of you...How did everything go?

For me, I tend to always feel weak but I get weaker the more I do. I was rested when he tested me by pushing on my arms but I knew I wasn't as strong as I used to be. As he repeatedly pushed on my arms, they got lower, and lower, even as we rested for a minute in between. Same thing with my legs. I know I used to be so much stronger, even a year ago. I can never quite get back to that.

Hello everyone! So we went to our appointment wednesday and spent SIX hours there! Four with the dr's themselves, I was so incredibly nervous beforehand.. It is the university ALS clinic, but they were really really nice, and spent a lot of time with one dr and then they had another dr come in as well..
The good, amazing wonderful news- No ALS! They even did an emg right then and there (I have two clean emgs from other neuros), but since I have this weakness in my hands with mild atrophy, it seems like something should be on the emg, well thankfully this emg was clean too! Done by the ALS dr himself...
the not as good news was - they were completely baffled.. they had no idea what's going on, they thought I sound like I have Guillian barre/cidp, but my reflexes are intact and the clean emgs, and normal LP goes against all of that.. I was numb to temperature, pin prick and my vibration sense was off too.. so large and small fiber neuropathy.. No one seemed to have a clue about my tongue and speech getting slurred as the day goes on..
So, we left with the great news it wasn't ALS, thank God!!! However, it was kind of unnerving to see these specialist so baffled.. I am a little upset that they didn't run the Musk test.. they sent a bunch of labs to mayo, but said that I didn't seem to have MG..
Kage- that is exactly how my neuro exams are-when they do repeatitive strength test on me I can't even resist them in the end - and I end up almost unable to use the muscles they tested for the rest of the day and am VERY sore the next day (i'm 31 I should be able to do simple strength tests!!!)
with my tongue, I think what's the harm in running the Musk tests, especially with them not having a clue.. I'm going to be an atypical case of something, though they just dont' know what it is..

I am going to get a skin/nerve biopsy here soon, and they are probably goign to set up an IVIG trial here in the coming weeks. I just pray I get better with it!!
So scarey having the specialist be stumped.. A trip to mayo may be in order.. Have any of you been treated in Houston? I have heard there are great neuromuscular guys in Methodist and Baylor.. Hope everyone is well!

So glad they were able to eliminate ALS....what a relief for you!

I haven't been treated at either of those institutions - but have a wonderful neuro outside of Houston. PM me if you want more info.

Thanks Suev! I have a great guy here that I really like, My other dr's had wanted me to see him since getting in with the university here was going to take a while, but they ended up moving thigns ahead so it didn't. We may end up having a trip to MAYO in our future.. I just hoped we could get an answer here, or in Houston since we'll be down there in a few weeks.

On another note- Does yall's face get fatigued after smiling?? If I laugh or smile, it's like my face tuckers out and I just can't do it anymore for a while.. ALL of my muscles are this way, but my face especially! I am also now noticing my slurred speech is defintely normal in the morning but progresses as the day goes on or if i talk a lot, and then if i rest it gets worse.. hummm.. So i researched the whole MusK aspect some more- it looks like patients can actually have muscle atrophy with it, along with the furrowed tongue and tongue atrophy.. huh!? I have vibration, temperature and proprioception loss in all limbs, but I am starting to wonder if that is separate - maybe just from post partum, malnutrition issues.. For those of you who had positive bloodwork, especially Musk, do yall know where they sent your bloodwork? To mayo, or can a lab like quest do it?
I think I am going to call my neuro here and have them go ahead and just run the Musk.. what can it hurt!

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

Hot showers are the worst thing for me...can't even lift the towel up to dry my hair! Usually I take lukewarm showers and then blast the cold water for a bit at the end.

Yes to all the things you have noticed....eyelids, frowney face, etc. My husband can 'see' my face melting and asks if it's time for a pill now!! But my first complaint that started the search for a dx was my right arm. I couldn't get it to work as long or when I wanted it to (still can't!).

Some other things that can impact MGers:
stress
not getting a restful night's sleep
alcohol
many drugs (OTC or script) are contraindicated

Re: bloodwork
My neuro swears Athena Labs are the only ones who can properly run the tests for MG. Even so, my insurance company would not cover Athena doing the tests...and all my antibody tests came back negative.

My neuro did a full thyroid panel, voltage channel c and k, vitamin b12 and d levels, complete IG panel, ANA, ESR, SLE, BUN, and creatin. A lot of that was differential dx stuff as opposed to things that related specifically to MG.

Keep asking questions and pushing for answers. You have been through such a great deal in such a short period of time and your body is still trying to recuperate from all it has been through.

Thank yall all so much!!! I can't tell yall how great yall have been, and how much I REALLY appreciate your time!!

Thanks Mike- I may have to try those tricks!!! I will make sure they test for the musk, binding and modulating. . I will be anxious waiiting to see if they are positive!

Abby- That's interesting, glad that they have found a treatment that makes you feel better at least!!! I can't wait to start my IVIG!! One of my fears is that they dont' figure out what's going on, and IVIG doesn't help so they wont' know what to try after that for this mystery illness! My weakness is so diffuse, i feel like sitting upright sometimes is just too much, smiling and talking, well just about anything really. I'm only 31, I feel like I'm supposed to be able to do simple things.. right now everything is so difficult!

Suev- that's interesting about your arm being the first symptom.. When you say it won't work, what do you mean by that?? I had all over generalized weakness, shortly after the eyelids not closing symptom began. I went through a time where I couldn't even stand on my toes hardly, I was just SOOOO weak!! But i just kept thinking i was sick with a bug or something, it wasnt' until my hands became REALLY weak- they never get better weak- floppy fingertips and thumbs that dont' work that I realized something was REALLY wrong! OO and I remember thinking a while back after I took some benadryl that all of my symptoms seemed WAY worse... didn't think much of it, then a week or so later took some more and again symptoms flared.. I had heard that antihistamines could make myasthenia worse, and thought huh? I wonder if that is pertinent? Guess it might be!!!
Thank yall.. I sure hope we get somet answers soon! I hope we are on the right track!!! I was at work today and I have to talk a lot, My speech became more slurred, and my face coudln't make the laughing or smiling "face" anymore until I just stopped talking and smiling for a while.. then I could again for a bit.. I just wonder if there is anything else out there that could cause symptoms like that?
Do any of yall have slurred speech? Do certain words seem to be worse, or is it just when your tongue tuckers out everything is funny sounding?

A few years back when I still had my horse, I noticed that I couldn't brush her very well. Very odd...hard to get right arm up to her back, brush and curry comb would 'fall' out of my hand. Got to the point where I was becoming quite good with my left arm/hand.

Then it started messing up my golf swing. I couldn't control the club after 16 holes or so....then 14 holes....then 12...etc.

Then I couldn't stir a batch of cookies with my right hand...or the frosting...without switching off to the left. Even handwriting...after about ten minutes was almost illegible!

Now those were the things I noticed. The ptosis, the difficulty walking my mile in the morning (suddenly breaks were required!!), the trouble getting out of my chair without the help of my arms, the sheer exhaustion I felt at times....nope, none of that registered!!

suev- wow.. That is interesting that it occurred more strongly in one arm! That makes me feel better, it's sad, but the thought of having to stir cookie dough sounds outright impossible- I don't think that's normal for a 31 year old to think huh? :) I know brushing my hair requires breaks, so I can only imagine lifting my arms for a horse - I used to ride as well, before I was pregnant, I'm sure if I could even get up on one, I wouldn't stay there for long now!! Do your symptoms still predominate in one arm more?
My hands are the worse, face and mouth next, shoulders and hips pretty awful and well just my whole body really! My dr is going to run the Musk panel... Also I got my ANA results today (previously they had been barely high at 1:80, which we didn't even think much of) but now they are 1:640, which from what I read is signifcant.. Does MG tend to have elevated ANA's since it's an autoimmune process?? I'm hoping that will help with getting the IVIG covered by insurance!

Yes, the right arm is still the weakest limb - - but is helped tremendously by Mestinon.

My understanding from my PCP is ANA is a non-specific indicator of inflammation elevated in response to an autoimmune condition. While it's an inexpensive way to see if something autoimmune may be going on, it is non-specific. Other tests have to be conducted to dx.

Thanks suev!! that is really interesting about your right arm being mostly affected!!
I worked all day today, and even by mid morning my shoulders were burning with exhaustion just by the weight of my arms (has that happened to yall??) My face and everything else was exahusted as well.. but I realized I have really noticed it in my shoulders from the weight of my arms/arms swining when I walk maybe.. I realized I hadn't been swinging my arms much when I walk recently after someone at work made fun of my slumped over no swinging arms motion ha.. i'm sure it was a funny sight for them i suppose! :)
Also I got home looked in the mirror (after all day of double vision), and my eyelids were in fact droopy!! Not overly like unable to open or anything, but defintely noticable.. I have never had "hooded" eyelids, i have bigger eyes that the fold has always been very visable, and they were very hooded this evening! like I needed an eyelift! Does that sound like the MG type of eye "droop"?
I should be goign to get the Musk testing tomorrow (we had to call and check where to get it done etc first). I'll let yall know! The thought of possibly feeling better with the help of some treatment is SOOOO exciting!!!